One of the oddest things about service providers and doctors in the life of those of us with dementia is their surprise when we forget something! Forgetting an appointment or an appointment IS our world, even with all the reminders in the world, even a phone call 30 minutes prior to it, sometimes even 30 seconds! I always think it is odd and funny that they would be surprised we would forget! My other wish is that they don’t speak slowly, as if we are stupid or loudly as if we are deaf. It has happened in front of me a number of times when I’ve been in attendance at events or occasionally when staff are speaking to my loved ones already living in aged care, and I find it incredibly patronising. No doubt it is done with the best of intentions, but it feels offensive and insulting.

I am presenting at the ADI London conference next March on two topics, one of them being Person Centred Care: An insider’s view, and below is part of the abstract. “There is a thin veil between people with dementia being treated with dignity as opposed to being treated like morons. This presentation will discuss my experience of Person Centred Care (PCC) from pre-diagnosis to diagnosis of a younger onset fronto temporal dementia, through the maze of gaining medical, community and service provider support following such a diagnosis. It will consider my personal experience of PCC … My observation of PCC from a family carer’s perspective of my father in law’s experience living with advanced frontal lobe dementia in a residential care setting will also be presented. Throughout these experiences, it is clear the goal of walking the talk is a long way from being realised. However I will also discuss the amount of effort I see being made by service providers in Australia to improve the experience PCC for people living with and caring for people with dementia, and the efforts being made to walk the talk of PCC in all settings.  …  Walking the talk is imperative for this to change, so finally, based on my Insider’s View this presentation will attempt to outline what it is we all need to do to achieve this goal.”

My challenge now is to put together a presentation that not only fulfils this abstract, but also communicates in ways that will encourage others to want to learn more of our inner experiences and how the lack of real PCC impacts us, and to work towards bringing about the much needed change. It will have to be honest, perhaps even brutally so to make people sit up and take notice, but also needs to be positive and give hope to those of us with dementia, and to those service providers and researchers who are already working hard to improve our care. If there is anyone out there, especially in Australia actively working towards improving the experience of Person Centred Care (who I’ve not already had contact with), I would love to hear from you.