There has been much debate over the last few years in the dementia sector (professional and community) about whether or not it is respectful to use the terms suffering, sufferer or victim when referring to people actually living with a diagnosis of dementia. Of course, some people with dementia do feel as if they are suffering, and no-one should tell them that is not their experience, nor think badly of them for it. However, that is not the whole experience for many.
Interestingly, the quote added to the image of the road leading to my girlfriends Jacinta’s farm at Poochera is on the header of a Facebook group for carers, many of them past or current carers of a person with dementia, and they loudly proclaim their right to label us as sufferers. Obviously, they have not read, or don’t believe in the quote so proudly posted on their groups page.
We all do suffer some of the time, or, experience the pain and anguish of living with dementia, and as a past family supporter of loved ones with dementia, I have certainly felt my own suffering as I have watched their lived experience. One of these people, did not appear to believe or behave as if he was suffering in any way, even the last week of his life when he could no longer eat or drink, and could barely speak. His courage was extraordinary, but I can honestly say, my suffering watching him was profound, deeply moving and extremely intense. In fact, I go as far as saying, I have not fully recovered from watching him and others I cared for, deteriorate and then die.
The people who seem the most upset about the tidal wave of people with dementia who are speaking out about their right to ask people to stop publicly using the words sufferer and suffering (from dementia), are mostly family supporters/carers.
Asking not to be labelled as sufferers publicly, is not, and has never meant to undermine the experience of someone else, in the same way some of my friends with disabilities privately use words none of us would use publicly (any more) about them, but they would never label any person living with a disability like that in public, not even themselves, and would rightly expect others did not as well. We all respect their right to determine what is respectful language when referring to them publicly. For those of us trying to live well with dementia, is it simply the very same respect we are asking for.
A few years ago, many of the offensive words we don’t use any more in the disability sector, were still being used in the Dictionary. They are now listed as offensive in the online Google Dictionary, and I have this hope for the synonyms and other words many of us find offensive, still being used for the word dementia, or to refer to us. See these slides I used in a presentation in Perth in October last year, highlighting this.