In her own words, Kate Swaffer shares her experience advocating for her worth

Dementia and ageing are thriving industries, and as the global population of people over the age of 65 skyrockets, this will become more evident. There are more than 50 million people living with dementia globally, almost 10 million new cases every year, and one new diagnosis every 3.2 seconds.

There is big money in dementia, and yet, I am seldom offered a fee for my time when asked to join an advisory group, or contribute to a publication or policy review. When I have requested a fee, I’ve been told there isn’t one and am then usually no longer invited. They do love you, until they have to pay you.

I have experienced economic stigma many times. In 2017, I was invited to be a keynote speaker at a conference in Australia, in which I requested a speaker’s fee for my time and expertise. I was told that no speakers were being paid a fee so I accepted the invitation to support the organisation hosting the event. On day 2 of the conference, one of the other keynote speakers (without dementia) asked me if I had been paid. I mentioned that I’d been told categorically that no speakers were being paid. She laughed and said she and all other speakers (without dementia) were being paid. The message was clear; ‘we’ were not valued enough to be worthy of a fee, even though many delegates told us ‘we’ were a large part of why they had paid to attend.

I felt stigmatised, disrespected, and annoyed. When I called the CEO to discuss the matter, I was told that “of course we pay professionals an honorarium to respect them for their time and expertise”.

People living with dementia should be respected for their time and expertise, too. Even though the vision and mission statements of many organisations claim that people with dementia are at the centre of their work, we are not fully or equally included, nor respected enough to be paid.

When organisations ‘engage’ people with dementia it presumably makes ‘us’ feel valued and included. This is not enough. In my twelve years of advocating for change, only the researchers from the University of Wollongong, and the University of Technology Sydney have agreed to pay for my time or expertise.

“People living with dementia should be respected for their time and expertise, too. Even though the vision and mission statements of many organisations claim that people with dementia are at the centre of their work, we are not fully or equally included, nor respected enough to be paid.”

Sadly, there is always another person to groom as an advocate, who will initially feel thrilled to be engaged and feel valued, and not request payment. Many who are contacted to provide [free] advocacy for an organisation, will do it to have a sense of purpose and meaning again, and to feel like they are making a difference; I suggest most organisations are taking advantage of this [us]. It gives people back the life taken away via the Prescribed Disengagement® given at the time of, or soon after their diagnosis. But as soon as an advocate requests payment, or decides to voice something that is not the ‘corporate line’, they are quickly and easily replaced.

I’ve been told repeatedly, if I won’t do it for free, there are hundreds of others who will. Seriously.

There is a significant amount of resistance to paying us for our contributions, or even fully fund us to participate. I presented as an invited keynote speaker in Perth in 2015, and had to partly fund my travel costs. At this same event, I was also a speaker on a panel about dementia and employment. A representative from a large pharmaceutical company spoke about how they use ‘patients’ to inform their work. When I suggested they should pay them as consultants, in the same way they pay other experts, the response was negative. Around the world, organisatons and researchers are often required to include people with dementia in their work but are rarely willing to fund us. This includes Canada. I flew across the globe as an invited speaker at Canada’s National Dementia Conference in 2018 and was not paid for my time or expertise; worse, I had to personally fund a very significant portion of my travel expenses.

Many say they have been inspired to set up a new ‘dementia’ business because someone they loved had dementia, or are ‘inspired by people with dementia, such as the late Dr Richard Taylor’. In all the times I spoke with Richard, we both wanted PEOPLE WITH DEMENTIA to be the one’s speaking up and setting the ground rules and guidelines for their lives, not the people without dementia. It is why we co-founded Dementia Alliance International. He wanted us to speak for ourselves and despised the many who were using us for their own glory. We discussed this often, as I felt the same.

Prior to my diagnosis of dementia, I was paid for my work; since dementia, the economic stigma is such that most don’t respect me enough to pay me. The stigma will continue if those who proclaim to be inspired by someone with dementia, or who promote their businesses or research using their relationships with us, do not start to employ or pay us (or at least donate to an organisation such as DAI).

We are a valuable ‘resource’, and provide significant contributions. Employing people with other disabilities took a long time, and, has a long way to go. For people with dementia, it is likely decades away too until organisatons start to employ us, or at least pay consulting fees.

This systemic and pervasive economic stigma discriminates against people with dementia. It also causes tension with newer advocates which, in turn, weakens the voice of the global community of people with dementia, resulting in fractured loyalties amongst dementia self-advocates.

It is doing us all harm. Even the oppressors. [ ]