“But you don’t look like you have dementia”

In January DAI hosted a Master Class “But you don’t look like you have dementia” about what is feels like when people who have been medically diagnosed with this or that type of dementia are accused of not looking like they have it. Kate Swaffer, our current Chair and CEO, and a co founder of DAI was maliciously accused of this late in 2016, to the point of feeling bullied by a reporter into disclosing decades of private, confidential and very personal medical to strangers and lawyers, and providing two highly confidential medical documents to the reporter. Once the reporter realised she was not a medical fraud, he still wrote a defamatory story which she responded to here…

Our Master Class “But you don’t look like you have dementia!”, held in an attempt to expose how commonly this occurs to most people ‘living well’ (at least publicly) with dementia, and how hurtful it is to people with dementia and their families. It also offers some advice on how to cope with it, and hopefully is helpful to those living without dementia, especially those who persist in doing this.

These people are the ones who have sat in doctors rooms and been told they have a dementia of this or that type, or a family member has it; they are the people told to get their end of life affairs in order and get acquainted with aged care services (often now referred to as Prescribed Disengagement®[i]).

Their families have been sitting alongside them, trying to hold it all together, and pick up the many pieces falling around them.

This phrase is said all too often to people with dementia who are publicly appearing to live too well, whether they have become public advocates, or are simply living well in their local communities. We  even have many stories of staff working in advocacy organisations saying it, as well as many care partners who volunteer for these organisation’s.

One woman from Australia, diagnosed for over ten years, but still living alone in her own home, and living beyond dementia, said in response to to Kate’s blog, of her own recent experience of being accused of not having dementia:

A “close friend” challenged me recently when I explained that I just could not travel overseas, with the words “Anyway, you don’t have Alzheimer’s”, and each time when I tried to respond, kept hammering at me, repeating “You do not. You do not!” Then with a voice of ultimate authority “Anyway, others agree with me!” implying that friends we have in common see me to be a fake, a pretender, a liar, whatever.

I felt terribly assaulted, as though I’d been stabbed, again and again – and by one of my closest friends?

I was in shock, asking myself -“Why would anyone ever do this to themselves. A life sentence! Losing so much of one’s quality of life – one’s mind? All the books you can no longer read, and so much more, and still trying to be “normal”. It was, and still is, just devastating to feel betrayed, by someone so close to you.

This habit, based on myths and preconceptions that everyone with dementia must look and act late stage for them to really have it, needs to stop, and in the worst cases, could be seen as a disability hate crime. There are too many people who have been medically diagnosed with dementia now in the public eye, either as speakers, authors, advocates or bloggers and who may not look like they have dementia, but in reality, not all the doctors around the world can be wrong. It is offensive, to the person diagnosed, to their families, and to their medical doctors, and quite simply, it has to stop.

It is harmful, hurtful, and wrong for anyone without dementia to accuse someone living with a chronic progressive terminal illness, that when diagnosed in the earlier stages of the disease, has mostly invisible disabilities.

In reality, as many people with dementia are now being diagnosed much earlier in the stages of the disease or condition causing their dementia, and although still being provided with late stage dementia management, they can and do often live well for many more years than was previously thought possible. And unlike something like Downs Syndrome, there is not a particular ‘look’ to dementia.

You can watch the recording of our webinar here… Please listen, and learn.

[i] http://journals.sagepub.com/doi/abs/10.1177/1471301214548136?ssource=mfr&rss=1; http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/