Economic Stigma

There are many factors keeping the stigma experienced by peopel with dementia alive, which is a topic I will be publishing on soon. In the meantime, I wanted to add an article I wrote for magazine called Dementia Connections in Canada, published last year.

Economic Stigma: They will love you until they have to pay you

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. 

Kate Swaffer is the chair, CEO and co-founder of Dementia Alliance International. Photo courtesy Kate Swaffer.
Kate Swaffer is the chair, CEO and co-founder of Dementia Alliance International. Photo courtesy Kate Swaffer.

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. [ ]

Kate Swaffer November 10, 2020

9 thoughts on “Economic Stigma

  1. Kate, I agree with you 200%! The 2017 “lie” experience is unbelievable! In many ways you are a PROFESSIONAL. And experience is more important to me than having received a degree in one field or another! Again, keep up the good works. You do make a difference to thousands, maybe tens of thousands, maybe millions of people living with Dementia as well as those caring about those living with Dementia. Fondly, Michael


  2. Hi Kate thanks for bringing this to the attention of others, I am appalled at this discrimination against you and others. Until others are ‘called out’ on this it will never change. I would be interested to ask those making such decisions to not pay presenters living with dementia (in my opinion the real experts) what is their justification to think this is acceptable practice. I am shaking my head in disgust Kate. How can we change this??


    • I’ve been mostly staying quiet about this, but shaking my head in disgust fir years too Ness! But it’s time it is called out and stays on the radar until it’s rectified equitably. That may help change it? We will see, as in spite of so much advocacy by people like me, JS has changed for people with dementia yet 🥲🥲🥲


  3. Yes! Dear Kate PLWD (People Living With Dementia )🦉Like Your Beautiful Self saved me By your publications ,As I only Heard the Word Dementia, and needing some understanding what it is .I was fortunate My Library Had Your Books and I was able to Have this Journey with some understanding with the links posted in your books for support.

    Prior and Post Dementia work needs to be paid or consulting fees also would be great for all the work you Do.


  4. Kate I was shattered as I read your accounts and was totally unaware of how disrespected and disempowered these large organisations are towards yourself and others. I feeling ashamed and quite disgusted that I have been present at some of these conferences and presentations, completely unaware of these injustices.
    Your article will certainly make me question my presence at future ones,
    Kind regards, Jen


    • Jen, thanks for your comments and support. It’s much more than a very sad state of affairs, and until it gets called out, nothing will change. And as a colleague said to me in a meeting yesterday, “many advocates are seduced by the warmth of ‘inclusion’”


    • I forgot to say, the only sector who think it’s not ok to pay me for my time and expertise, is the dementia sector. Even the external advisers die the Royal Commission were paid, except for people with dementia… 🥲


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