Soon, I believe, society will need to legislate for changes around inclusion in employment in the same way Aboriginal Australians had to, those people living with other disAbilities have had to, and in the way women have had to fight for equality for many years (sadly, these groups still have to), for any sense of real equality. Quite simply, it seems, all employers might have to be forced to employ a certain number of us. They might be forced to have at least one person with dementia on their Boards, if they do not start to properly and fully include us.
The challenges we face, even within the dementia advocacy organisations around the world, is that their vision and mission statements usually claim that people with dementia are at the centre of their work, and yet, so few of us are fully included. There is a significant amount of passive (sometimes assertive) stigma against our inclusion, and our abilities to contribute. I presented as a keynote speaker at #ADI2015 on what I believe needs to change for there to be Dementia Friendly Communities, and this includes equal rights to employment. I was also a speaker on a panel about dementia and employment, hosted by Harry Johns from Alzheimer’s America, and it was an illuminating session.
Someone from Eli Lilly spoke, and talked about how they use ‘patients’ to inform their work, I suggested they should be paying them as consultants, in the same way they pay other experts. There was not a really positive response from this woman, but at least it is out there!
People with dementia are the experts, and everyone who uses their expertise should consider paying them for it, especially if it is a significant number of hours and ongoing commitment.
Alzheimer’s Disease International (and all other advocacy organisations) already pay for all sorts of ‘Expert Consultants’, and are now talking with us at Dementia Alliance International about paying our organisation to provide advice and to write reports. This is a wonderful development, and will help to ensure this organisation lives on, and is recognised for its expertise and value. There were a huge number of people with dementia at the conference this week, and many of the service providers, and some academics said to us, this made it one of the best conference shuteye have ever attended. What can be learnt from the lived experience is unique, and truly authentic.
In order to create positive change in the care and lives of people with dementia, we are the key to the solution. We must be part of the solution, and at the centre of every conversation about becoming dementia friendly. Without us, it is bot only a joke, the work that will be done will not suit our needs, as unless you ask us what they are, and you do not yourself live with dementia, you cannot fully understand or know what our needs are.
Including us, employing us, paying us for expert advice or as consultants, is the best way others can reduce stigma, discrimination, isolation, and almost every other negative side effect of a diagnosis of dementia, as well as finally smashing some of the myths of dementia.