Today I have had the honour of having presented “The Power of Language” at a Symposium in Perth, Western Australia. The full program is here Dementia Partnership Project Programme_The ME in Dementia. I have often referenced the invited international guest speaker Dawn Brooker in my writings, and so am delighted to have now had the pleasure to also meet her.
Here is a copy of the slides DPP Symposium AAWA_SwafferK_The Power of Language_7Oct2014, and my speakers notes:
The power of language
I am married and have two sons, aged 24 and almost 25. In 2008, I was working full time, studying a tertiary degree, caring for our school age children and running our home with my husband, and volunteering in a nursing home and in the children’s schools, and as you can see by this slide I have had a few careers, and a number of health and personal crisis, and I am very happy to still be here!! Despite a diagnosis of dementia, I am living well with, and refusing to be defined by dementia.
My life was, and still is, incredibly interesting, possibly busier than I have ever been in my whole life, and very fulfilling.
Why speak out?
- To understand the human cost of dementia
- Break down the myths, discrimination and stigma
- Expert by experience
- So others can walk in my shoes
- Nothing about us, without us
- To educate and raise awareness
Language is a powerful tool.
Our words do reflect our thoughts and feelings, and can show respect or disrespect, and language is a powerful tool. The words we use can strongly influence how others treat or view people with dementia. For example, referring to people with dementia as ‘sufferers’ or ‘victims’ implies that they are helpless, and this not only strips people of their dignity and self-esteem, it reinforces inaccurate stereotypes and heightens the fear and stigma surrounding dementia.
‘When your child is no longer a child, you will have to find a new language.’
We would not hesitate to consider the ability of a child or any other disabled person with different communication needs, and yet this is frequently not the case for people with dementia.
That is not to say we want to be spoken to like we are children, but rather that the same amount of effort and respect is placed on learning to communicate with us.
Definition of dementia
The word dementia comes from the Latin meaning madness, and so no wonder we struggle against the myths. Recently a politician justified calling me demented, because technically I am! However I find that term very offensive.
Note the synonyms… no wonder we struggle against the myths.
Definition of disabled
In contrast to dementia, note how the definition now defines words that are no longer appropriate to use; e.g. Offensive: retard, retarded, tard, handicapped, impaired, crip, cripple, lame. I have this hope for the definition of dementia.
Is language important?
- It defines the way others see us
- It allows others to communicate with us
- It defines the way we view ourselves
- It allows us to communicate with others
- It can impact stigma and discrimination
The words we use not only strongly influence how others treat or view people with dementia, perhaps more importantly they can impact how they view themselves and how they relate to others, which can negatively impact their ability to be empowered. It has the potential to promote and empower, enable and increase self esteem, and encourage one’s ability to self help and self advocate.
Or it can demean, devalue, disrespect and offend those we refer to.
People can live well with dementia, and the language used about them needs to be normal, inclusive, jargon-free, non-elitist, clear, straight-forward, non-judgmental, and which centres on the person not the disease or social care system, or language trends that come and go.
The definition of stigma and the role it plays in defining the experience of people with dementia is well documented. In 1963 Erving Goffman referred to stigma as “spoiled identity”, and in 2001 Link and Phelan discussed it in terms of persons being negatively labelled, a loss of status and power, discrimination and stereotyping.
Language and stigma
Language does affect the experience of stigma. The phrase ‘Sticks and Stones’, in my experience of living with dementia do break my bones, and offensive and demeaning labels and language simply intensifies the SHAME and STIGMA people with dementia already feel.
Stigma affects a number of things, including the person’s willingness to seek diagnosis, to seek support once diagnosed, a lack of willingness to participate in research. The care provided is also of a lower standard due to stigma within the health care profession, and services are distorted. In 1990 a study by Scheff claimed stigma increased the feelings of shame, and in 2012 ADI reported people with dementia still feel a deep sense of shame. This is unacceptable, and I believe language has a lot to do with it.
Stigma affects more than just well-being and quality of life for people with dementia and their families.
Language, inclusion and providing dementia friendly communities are important in the reduction of stigma, and without positive change, stigma will continue to be a significant burden on people with dementia. Stigma is still a salient feature of the experience of people with dementia, and because of this earlier this year I explored the existence of stigma within the dementia literature. It is apparent there is a lack of research focused on the effect or feeling of stigma from the perspective of the person with dementia, and how stigma might be exacerbated by the use of incorrect information and inappropriate and offensive language used to describe people with dementia. The Honourable MP Ms Kelly Vincent says when communicating with people with disabilities, that they are the experts; so too are those people diagnosed with dementia.
Language in the workforce
The most fundamental skills required in any organisation are language, literacy and numeracy. They enable us to:
- Process information
- Communicate effectively
- Contribute to productivity and performance
- Enjoy socialisation and team building and our general ability to enjoy our job and work environment
- Builds confidence
- Builds the ability to adapt to our changing environments
Most of us would agree that in the workforce, the most fundamental skills required in any organisation are language, literacy and numeracy (LLN). They enable us to process information, communicate effectively and contribute to productivity and performance, as well as socialisation, team building and our general ability to enjoy our job and work environment. These skills also arm us with confidence and the ability to adapt to our changing environments.
Therefore, in the workforce, it is critical that workers have the knowledge to recognise when a person with dementia needs assistance with language, literary or numeracy and adjust their care accordingly.
This surely applies to how health care staff delivers care to people with dementia, as our impairments should require that staff have knowledge in how to assist with our impairments. Unfortunately, I have more often seen impairments being seen as ‘difficult behaviours’, which are then treated with restraint of some kind, rather than seen as impairments to the person’s ability to communicate.
I find it curious that speech pathologists are not included in the care plans of people with dementia, considering our language and speech impairments, and their expertise in this area – food for thought.
Let’s hope also that those people caring for people with dementia will consider the impairments we have in language, literacy and numeracy, and assist us with better strategies to manage them, rather than ‘treat’ us with drugs or other forms of restraint or insults. It might appear funny not knowing how to use a biro, but the frustration of not being able to do a simple task like that would be very annoying! I know, and although most times I still know how to use a biro, many other simple tasks have become difficult, or impossible.
In the context of people with dementia, this is important. If we cannot enjoy nor have the ability to continue with good language, literacy and numeracy, then our experience of happiness and well being is impaired. Of course we will display ‘challenging behaviours’ if no-one bothers to understand us, or our needs.
When people with dementia have reduced or impaired language abilities, then it is up to others to learn how to communicate with them, not the other way around. If challenging behaviours become part of the experience, then it is more likely due to not being able to express things like pain, poor tasting food, being bored, than it is the fault of the person’s dementia.
If we continue to behave in challenging ways, then others need to change something, not us, and using physical or chemical restraint is not the answer, but rather a blatant abuse of our human right to be understood and cared for the best way possible.
Language and dementia
People with dementia continue to be labelled as ‘challenging behaviours’, by people without dementia, in ways that continue to marginalise and stigmatise us. This may seem simple semantics to someone without dementia, but it feels personal and important to me
The language of dementia is changing or evolving into one that is more acceptable to people with dementia. It may well be the key to a more person centred approach to care, and the key to reducing shame and stigma.
Until recently, the language of dementia has been decided by people without dementia. Not just family carers, but care providers, nurses and doctors, people in the media, researchers and academics. And now people with dementia are speaking up and saying if it is acceptable. For the most part, it is not.
Language simply means the method of human communication, either spoken or written, consisting of the use of words in a structured and conventional way, or a system of communication used by a particular country or community.
People with dementia have not spoken up before, at least not in such large and united numbers. Thanks to the internet, there is a groundswell of people with dementia, speaking to each other, swapping stories and feelings about things like care and policies, and comparing each other’s countries to our own.
We are also comparing our lived experiences, and things such as the language being used to describe us or those who care for us. We have opinions, and feelings, and no longer is it acceptable for others to speak for us, or about us without us.
People with dementia are now developing the language most appropriate for our own community, a language we feel is respectful and inclusive, and not one selected for us by others.
We would consider finding translators for people who speak another language, in all sorts of places including the health sector, is the right thing to do, to ensure the persons own language is being used and respected. People with dementia re right to have the same expectation; the language of dementia is now developing, and this will ultimately ensure we are afforded respect… and a voice.
Others need to learn our language, and it needs above all to be respectful and empowering.
Language and the media
- The media continues to stigmatise and labels us with devaluing and negative language
- Journalists mostly refuse to engage in debate with people with dementia regarding respectful language
- The media refuses to view the word suffering in the same way they view the word retarded
- Many refuse to refer to the latest language guidelines
As the editor of an international advocacy and support group, of by and for people with dementia, I read or am referred to many articles in the media about dementia. Most of them require a comment from people living with dementia, in order to either re-claim our human rights, to request the same respect offered to everyone else in the community, or to complain about either the misconceptions and myths the articles portray, due to the ignorance of those without dementia, or the biases and prejudices of a few.
PWD believe that if it is in the public domain, and a group of people find a word, words or terms offensive, then we do have the right to ask others to stop using it, in the same way we – and they – would NEVER refer to someone with an intellectual or physical disability as a retard or retarded any more. Not because they are not retarded, as technically they are, but because this group find its offensive. I often call myself retarded to make a point, and people are horrified I would refer to myself that way, and often, these same people are often aggressive in their right to offend me and other people living with dementia by calling us demented or sufferers.
I have written extensively a number of times about language and dementia, including saying this; “Does ‘I am suffering from… dementia, arthritis, cancer, MS etc’ sound more negative and less empowering than ‘I am diagnosed with…’? Whilst the term suffering may technically be ‘correct’, I cannot see how anyone could not see it is not negative and disempowering.”
We [people with dementia] are not, “not all there”, we are still here, and we still have feelings and opinions and rights. Some of us may suffer from dementia or other diseases some of the time, but that does not necessarily make us sufferers.
The media spoon feeds the public, and has a responsibility to feed it the truth, with respect for all of those it portrays.
This includes people with dementia.
Language in research
- The language in research continues to label us negatively, further exacerbating the stigma
- Is this what is effecting knowledge translation into better practice?
- Medical benefits require the use of certain labels to provide certain payments
- Health care workers continue to use negative labels that dehumanise people with dementia
- This continues to stigmatise people with dementia
I have explored stigma in the literature, looking at it in a new way by questioning whether the researchers exacerbate stigma, even though their intent is to promote positive change. Considering the lack of inclusion of people with dementia in the cohorts being studied, it is still very much “about them, without them”, which cannot give a true picture of the issues at hand for this particular group, and simply serves to reinforce the stigma. Caregiver stigma has been explored often, (Werner, Mittelman, Goldstein & Heinik 2012; Mackenzie 2006; Dean 2011; Phillipson, Magee, Jones, & Skladzien 2011) but very little on the stigma as experienced directly by people with dementia.
No longer can this expertise be ignored as people with dementia are the experts through the lived experience, and not including them in research, not only stigmatises them, but it hinders the validity of the research. This is important as much of the published research is biased through the use of family carers as the main cohort group, or having them in attendance when people with dementia are interviewed, and so the carer voice remains the main voice in the stigma research.
There is a significant body of evidence to draw upon, and, the literature appears to show more positive attitudes. However this may be a socially acceptable veneer covering up the embedded and unconscious negative attitudes that drive human behaviour, expressed as stigma and discrimination.
Language in health care
Communicating ‘about’ people with disabilities
If you’re communicating about disability issues or people with disabilities here are a few golden rules to live by:
- Ask yourself if it’s necessary to identify the person as having a disability. If you’re preparing a document on community gardening in which a person with muscular dystrophy provided comment on the best type of trees to plant, their disability is probably irrelevant.
- Always put the person first. When describing someone with a disability they are not totally defined by their disability, such as in the phrase “wheelchair bound”. Instead they are a “wheelchair user”.
- Avoid using pitying or sensationalist terms. Most people with disabilities don’t see themselves as “debilitated” or even “inspiring” – they just see themselves as people much like anyone else.”
Will changing the model of care currently used in dementia, change the narrative of dementia?
Subsequent to the diagnosis of a younger onset dementia, health care professionals and service providers told me ‘to give up work, give up study, and to go home and live for the time I had left’. On the way, it was also suggested I put my end of life affairs in order, even though at no time was I told dementia is a terminal illness, and to get acquainted with aged, including selecting a respite day care and residential care facility, sooner rather than later, so that I could become used to it. My husband was also told he would have to give up work soon to become a full time carer. I quickly termed this prescribed disengagement, and thankfully I eventually chose to ignore it.
The cost of this Prescribed Disengagement sets people with dementia to become victims or sufferers, and their partners to eventually start behaving like martyrs, and to take over for the person diagnosed. It sets people with dementia up to believe there is no hope, there are no strategies to manage the symptoms of dementia, and more importantly, that it’s not worthwhile trying to find any. It negatively impacts self esteem, a person’s finances, relationships, and the ability to see any sort of positive future. Having dementia does not mean you have to give living a pre-diagnosis life, nor living beyond your diagnosis. For some, following a diagnosis of dementia, their whole life becomes about dementia and many seem to forget to keep living the other parts of their lives. This is the negative effect of the prescribed disengagement.
Prescribed Disengagement also takes away any power or control of the person diagnosed, giving it all to the family carers and service providers. It is unhealthy, and wrong. Dementia is the only terminal illness I know o where people are told to go home and give up, rather than to fight for their lives. Prescribing disengagement also lowers a person’s own expectations about how they can live, and it lowers others expectation about how we can function and live, including employers, health care professionals and service providers.
I think this speaks for itself. If we change the model of care to that of supporting disAbilities, we have a chance of empowering people to strive to live their pre diagnosis lives, and to fight for their lives.
- Suffering from dementia, vs
- Diagnosed with dementia
We use the word ‘disabled’ rather than retarded, because people with disabilities started to speak up for themselves, and found the word retarded disrespectful… Even though the dictionary definition might suggest it is appropriate.
No longer is ‘demented’ or ‘a vacant dement’ as I read recently, an acceptable term for people with dementia.
First and foremost, we are people, with names, living with dementia.
The term ‘Living with dementia’ is now only appropriate to use for the person diagnosed with dementia, the very people it affects more deeply.
This is not to say our beloved carers should not be part of the conversation… It is obvious they are, and we quite rightly must respect them and their opinions. We love them, and appreciate their care and support, and in no way would those of us with dementia wish to insult or offend them.
While no individual in any identifiable group can be said to be the single voice of that group, it remains the right of that group as a community to have a voice to speak about how it is that the ‘rest of us’ speak about them – therein lies empowerment. It will help to remove the discrimination, stigma and isolation, and will help others see that people with dementia are still very capable of contributing positively. As we have not been active in our own advocacy until recently, it is not yet the norm, and this affects how people treat us. It is a very recent phenomenon that people with dementia are included in the conversations that are about them. Sadly, staying engaged means many people with dementia are accused of lying about their diagnosis. Personally I prefer to ignore these doubters and continue to strive to live well with dementia; it comes from the stigma still very present, and from ignorance.
It is clear from the numbers of people with dementia who are standing up and speaking out as advocates that there is still a good life to live even after a diagnosis of dementia. We do not have to accept the prescribed disengagement and give up our pre-diagnosis lives. I recommend to everyone who has been diagnosed with dementia and who has done what the doctors have prescribed to ignore this well-meaning but negative advice, and re-invest in life.
20 things not to say or do to a person with dementia
Alzheimer’s Australia Language Guidelines 2014 – https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf