Employing ‘experts’ in dementia

expert consultingAs we have been travelling around the UK, just like in Australia and many other countries now, there is a lot going on regarding the dementia friendly communities work, and lots of excited and truly committed professionals working on these initiatives, and organisations hosting and attending events about being dementia friendly.

So far, Australia is the only advocacy organisation I know if that has actually employed someone with dementia in this work and even though it was only for six months, it was an outstanding start.

Advocating for action, advocating for change, advocating for our rights to an inclusive, accessible, non discriminating community or organisation needs to start from within.

The organisations ‘leading the way’, I feel, must themselves act upon their own words, and not just engage with us, but actually respect our expertise enough to employ us as consultants.

Employing people with dementia is the ultimate “dementia friendly” litmus test.

If an organisation was, for example, setting up a new IT division, they would employ or contract expert IT consultants…

Setting up dementia friendly communities is no different. If it remains about us, without us, it is not in the least bit dementia friendly. Too often, even dementia friendly communities conferences or events are still being run without us. It is not good enough, and we must stand up for FULL inclusion.

One or two of us is not enough either, and it is still, very much, as if we are being ‘helped’, still very much us and them, as if we are not able to act fully for ourselves. We are still all here, although we may be “changing in ways that others are not” (John Sandblom, 2014).

Employing people in this work, none of whom live with a diagnosis of dementia makes no sense, and shows us little respect. It is also not fully and authentically including us in the very matters that most affect us; we are the ones who can say what is and what is not dementia friendly.

Too often, organisations are engaging with people with dementia, to ensure they can meet certain criteria;

  • They can market themselves as having included people with dementia
  • They can apply for funding where the requirement is to have engaged with people with dementia (in my experience, too often it is only with one or two people with dementia, but the funding still gets through!)
  • They use this engagement as a marketing tool to increase their business; indirectly, this means they are using people with dementia, rather than properly and fully engaging them, and as I have said before, there really is big money in dementia.

Engaging us, rather than employing us is a major issue, as none of these organisations seem willing to employ us, even though they advocate for full inclusion, non discrimination and reducing stigma. The time is now, to practice what is being preached, if they are serious.

7 thoughts on “Employing ‘experts’ in dementia

  1. Pingback: Better Practice 2015 conference | Creating life with words: Inspiration, love and truth

  2. Reblogged this on Dementia Matters and commented:
    In this excellent blog article Kate Swaffer explores how – Employing people with dementia is the ultimate ‘dementia friendly’ litmus test…. check it out


  3. Surely this sounds like a foreign concept to the peddlers of ‘purse centered’ dementia care. IMO the field of dementia care will not be culturally dementia sensitive, and friendly until there are PWD employed and having input into treatment protocol. I have met some amazingly talented persons in our part of the world and I can only imagine the major contributions that could be made by us that could revolutionize the field of dementia care. I am a professional in the field of psychology working undercover because the ADA (Americans with Disability Act) is not yet ready to accept or support me in working with my disability! It is not easy but I’m trying to keep going for as long as I can. I’ve always loved my work and I am a natural helper and the clinical knowledge that is required for me to continue working seems to have become a part of me. This is all in light of the fact that I have problems finding my garments when dressing for work, cannot figure out change or how much my morning coffee will cost!


    • Thanks for joining the conversation here, and for sharing your own experience. Sad you don’t feel able to work other than ‘undercover’, obviously for fear of discrimination! We must keep up our advocacy and activism, together… x


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