One has to ask, is the dementia industry friendly or non-friendly to people with dementia. We arrived at the Conference venue, which is in such a remote place, the taxi driver was lost for over 40 minutes trying to find it, even though he has lived in London for over 23 years. Because the experience is not getting any better, I decided a review was in order, and thought I’d start on the venue first. It is set amongst an industrial site, near the city Airport, and our room is overlooking what looks very much like a rubbish tip, set just behind the railway tracks. No shops, nowhere to go if we need a break, other than a room the size of a shoebox. Two people residing here for what is going to seem like an eon, one moderately comfortable King Size bed, also a mistake though, as the room is really only big enough for one King Single. Three pillows, so I’m not sure what we’ll do if we both want two each? Any brilliant ideas at this point would be gratefully accepted. One reasonably sized TV, but way too funky and tech-friendly for someone with dementia. Almost too hard for her dear husband to work out! One desk, with space for two people to work side by side, but only one office chair. No other chairs in the room either, so sitting is not an option for more than one person at a time. Access from the hotel section to the conference area is via the external access doors only, or over an area from the second level, but both options via the fresh open air method. I can’t wait to walk through the rain and sleet tonight to go the welcoming reception! Oh, and did I mention, it was advertised as ‘the place to stay’ for this conference, because it had ‘covered walkways to the conference venue’. They lied. And on another hot topic of mine, there are only 2 paper coffee cups for us to use to make our own tea or coffee. Perhaps I should have sent them an email in advance saying I avoid places like Gloria Jean’s because I prefer not to use paper cups as one of my ways to be more environmentally friendly. Even the ‘water glasses’ are disposable plastic. The hotel  provides a 24/7 service of food and refreshments, as long as you are willing to go down to another shoebox sized area and help yourself (which includes a pay as you go ‘service’), casually written up on the TV information centre as ‘make your own cappuccino’!!

And now onto the topic of the conference. The Conference Programme booklet would indicate the conference was being held in the middle of London, as it has a wonderful image on the front cover of Big Ben with city traffic whizzing by. One welcome letter implies the conference is mostly for people in the medical, scientific or research fields. The next letter talks of the highlights of visiting London and the UK, of the opportunities for delegates to explore the city, renew friendships and develop networks. The third welcome letter is more general, but states this conference has the highest number of people with dementia in attendance than ever before, and how it is their view they must give people with dementia a global platform and voice. I wonder why then, have I already experienced so many dementia-unfriendly things, and the conference hasn’t yet started? Perhaps it is merely a tokenistic offering; my jury is still out of course as I have to actually attend and present at what has been so far, a dreadful experience. The registration process, even for my husband who does not have dementia, was difficult; a two-part process, in separate areas. And then, the name badge for those of us with dementia, rather than having our name and delegate, like everyone else, labels us as people with dementia, increasing the feeling of otherness and nobodiness, further stigmatising and discriminating against people with dementia. Of course, I refuse to wear it. Well, that is how I feel right now, and if we had not paid a fortune to get here, and I had not spent many months of my time preparing presentations, I would leave immediately, regardless of the fact there is no refund on the accommodation. I asked my dear husband, am I over-reacting? He thinks not. I wish I was, but now I will spend the rest of my spare time re-writing my presentation on Person Centred Care: An Insider’s View, as it must include these current negative experiences. The other issue of presenting at conferences, as a person with dementia, is there has been no recognition that our fatigue levels are greater than others, and we have been placed on the programme to present in the afternoons, some as late as 4:50pm. This also happened to me at the Speakers In Residence Conference in Adelaide recently, and I realise there is definitely not a level playing field. Some will say, if you want to present at these types of conferences, suck it up Sunshine! However, if I was sight impaired or in a wheel chair, many accommodations would have been made for me. I am left to wonder, will things ever change? Unless people like me keep taking deeply personal risks for speaking out honestly and loudly (e.g. being rebuked or silenced as we may not get invited again), I think not!

Ps. I will stick it out, simply because I have made a commitment to do so, and I will endeavour to continue to report on my experience over the next few days. For all our sakes, I sincerely hope it improves!!!

Pss. I was going to wait until after the Welcoming Reception to post this blog, but thought better of it; I would hate for my review to be worse than it already is on one blog.