'Do they still recognise you?': Our language matters when speaking about dementia

Provocative metaphors may be allaying our own fears and anxieties about dementia but we are doing nothing to promote the dignity, personhood and well-being of the individual, writes Professor Suzanne Cahill

We need to re-shape our thinking about dementia to enable us to connect with rather than distance ourselves from those dear to us who have the condition.

A recent newspaper article used the word ‘sufferer’ to describe a person diagnosed with dementia. 

Within a few days, the Alzheimer Society of Ireland (ASI) had contacted the newspaper requesting that journalists refrain from using this term to depict the person diagnosed. They referred to the ASI’s own guidelines on dementia-friendly language and claimed that the word ‘sufferer’ was stigmatizing.

Coincidentally, the same week a thread appeared on my Facebook page, aimed at raising awareness about dementia. It referred to dementia as the long goodbye and talked about the patient becoming a totally different person because of the condition, forgetting who their loves ones were. It appealed to all of us to fight the battle against AD.

So what does this tragedy discourse achieve? Is it an accurate portrayal of people living with dementia? Dementia is often described as a tsunami but are we really witnessing a tsunami? Do people diagnosed always lose their identity and is the family caregiver really the hidden victim?

Starting with the supposed tsunami of dementia, a word that in itself triggers fear, in fact terror for some, lets reflect on the facts. Yes, the number of people living with dementia is clearly on the rise. Globally, about 55 million people have the condition and these figures are set to almost triple by 2050. Population growth and population aging are the main reasons behind this large rise in global dementia cases. 

But calling dementia a tsunami is alarmist; it gives the impression that the condition is unstoppable and not preventable.

It overlooks the fact that there is a growing body of evidence from North America and Europe that now suggests a decrease in dementia incidence rates (new cases of dementia in population over a particular time). 

This is potentially due to increases in educational attainment and improvements in the management of cardiovascular disease and its risk factors. Indeed we now know that about 40% of dementias are preventable through risk factor modification.

Dignity

Next is the assumption that the person diagnosed loses their ‘identity’; that they are ‘gone’ ‘lost’, or ‘socially dead’ ravaged by a fatal disease – the ‘mind robber’. The language here suggests that dementia is a ‘living death’ and that it creates a total loss of self and identity.

Words are powerful: it is not just the words we choose but what we think about people when we use these words that matters. These are negative words that do nothing to promote the dignity and humanity of the person. 

Nor do they accurately portray all people living with dementia. There is a huge spectrum of dementia and diversity across people who have, as an example, Alzheimer’s disease or Vascular Dementia.

Sadly, the judgment that a person because of dementia is as good as dead may and often does become a self-fulfilling prophecy. The danger is that it may make it acceptable to treat those with severe dementia, as people unable to experience humiliation; or that all that is needed is that they are managed and measured. 

Although dementia may lead to a reduction in some aspects of the person’s memory and cognitive functioning, it does not take away their dignity and personhood — the essence of who they are. It is the treatment they receive from others that can remove such profoundly important aspects of humanity.

Caregivers

Most family caregivers are also familiar with the question often asked, ‘does your mother/father still recognize you’. It is generally posed by well-meaning friends and relatives to identify the stage of dementia. There is an assumption that dementia follows a linear downhill trajectory and that the inability to remember someone by name, means that the person can no longer recognize a loved one.

People living with dementia have good days and bad. And although on any one day, the person may not recognize someone close to them in the narrow cognitive sense, they may still realise, through scent, hand-shake, tone of voice or some other behavioural characteristic, that this is a person very dear to them.

Research has shown that people with advanced dementia can track conversations that have an emotional component even though they are not able to verbally participate.

Then there are metaphors that portray family caregivers as hidden victims, that they are in a state of constant bereavement; also the idea that dementia imposes a burden on the family carer. Of course it would be misleading to minimise the strain and stress many carers experience, but ask any family caregiver who has relinquished home care would they do it all over again, most would say yes.

And for some people, especially spouses, caregiving can be rewarding; it can provide an opportunity to return kindness, love and compassion. It is therefore important to use language that covers the breadth of the caregiving experience and to undertake research that not only investigates burden but also other correlates of caregiving, including carer satisfaction.

Language matters

The tragedy discourse has in the past been the dominant narrative. It has probably been used to generate forceful messages, raise awareness and attract research funding. But as we learn more about dementia, we learn that the person with the condition has more in common with all of us than they have not. Once alive their identity can never be eroded, unless those of us who are cognitively intact choose to do so by our words and actions.

So the ASI is correct, language matters and is very powerful. We need to avoid negative words like victim, sufferer, tsunami and so on. We need to choose person-centred language that better aligns with scientific facts and human rights. 

We need to re-shape our thinking about dementia to enable us to connect with rather than distance ourselves from those dear to us who have the condition. For in choosing provocative metaphors, we may be allaying our own fears and anxieties about dementia but we are doing nothing to promote the dignity, personhood and well-being of the individual.

• Suzanne Cahill is an Adjunct Professor of Social Work and Social Policy at Trinity College and holds an honorary Professorship in dementia care from NUI Galway.