A number of people with dementia, or caring for loved ones with dementia have been discussing and reviewing the language being used in the sector. The LGBTI community have their own document on the use of what is appropriate and what is offensive language, and this goes some way to assisting us in the development of one specific to dementia in general.
For example, the name of one section of Alzheimer’s Australia, the Dementia Behaviour Management Advisory Services (DBMAS) service is mildly offensive, and I believe stigmatises people with dementia. It says on one DBMAS website; “The role of the Dementia Behaviour Management Advisory Service (DBMAS) is to improve the quality of life of people with dementia and their carers where the behaviour of the person with dementia impacts on their care.”
Behaviour in almost all cases, is an expression of communication, when the usual ways to communicate are no longer possible, or not being heard. All education sessions and conference I have been to in the last few years have taught this, including Alzheimer’s Australia.
We would most definitely say this was so for very young children, and rather than lock them up or give them drugs, we try to understand what they are trying to communicate.
Therefore it would assist greatly with reducing stigma and discrimination if the word ‘Behaviour’ was exchanged for ‘Communication’. I regularly hear experts discussing the FACT that most dementia behaviours are simply a form of communication, caused by the impairments of the disease, not the behaviour of the person. Why not then, call it the Dementia Communication Management Advisory Service?
Learning the language of dementia, rather than expecting the person with dementia to communicate in the same way as a person without dementia, is important. If we travel to a foreign country, most of us attempt to learn at least a little of their language, not only to assist with our travels, but out of respect for the people in the country we are visiting.
In our CALD, MAC and Indigenous communities, we see the importance of having interpreters for those who cannot speak English well. Learning the language of dementia is therefore a key component of good care, which will also help to alleviate the use of physical and chemical restraints.
People with dementia are labelled with difficult and challenging behaviour, by people without dementia, and in ways that continue to marginalise and stigmatise us, no matter how subtly. This may sound to be simple semantics to someone without dementia, but it sounds important to me.
The term ‘Living with dementia’ is being used around the world by professionals to sell books and careers, and by people who care for us, rather than people who are living with the diagnosis, and this too, impacts us negatively. If I had cancer, my husband would not say he lives with cancer, but with Kate, who is fighting or facing a diagnosis of cancer. It seems the word dementia is the key to funding, focus and promotion, and the term, ‘Living with dementia’ is being used [IMO] far to liberally.
As always, I want to bring up topics that may cause debates… I had one care partner argue with me against my feelings about the use of the term, ‘Living with dementia’ in Canberra recently. We discussed it at length, and I’m not sure where we left it, but can say that although she gave me another way to think about it, ultimately I didn’t change my opinion on it. Christine Bryden, another courageous advocate for dementia, agrees vehemently with me, as does my dear husband, so at least I have two allies on this particular topic!
As Richard Taylor says, onwards and upwards…