A ‘thriving’ dementia industry

Screen Shot 2016-01-31 at 6.25.31 amIn 2014 I wrote a blog called there is big money in dementia.  I’ve just re read it, and also the many comments made by some of my wonderful blog readers. I am constantly reminded about this problem, and whilst we need a thriving industry to better support people with dementia and our families, it should not be at the cost of fracturing loyalties between people with dementia, for one’s own purpose or business. This of course, if what is happening all around the world, as I see organisations ‘engaging’ with consumers, making their lives and contributions seems like gold, and yet, ensuring the voice of the global community of people with dementia is weakened.

Many are inspired to set up a business by a partner, a mother or a father who had dementia, and many, now that he is no longer with us, are ‘inspired by the late Dr Richard Taylor’. Richard, in all the times I talked to him, 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., He wanted us to speak for ourselves, and despised the many who were using us for their own glory. This is, in fact, one of the last things he said to me, after he recorded the Foreword he wrote for my recently released book.

If those who proclaim to be inspired in their work by someone with dementia, and continue to promote their businesses using their relationships with us, yet do not start to employ some of us, or who ‘engage’ with us but at the same time cause us to become a fractured community, then I will not believe their intentions to be completely honourable. I will never believe anything other than there really is big money in dementia. It is my ultimate litmus test, as it is for the community of others living with other disabilities. It was grand to legislate for wheel chair ramps, but actually employing people with disabilities took a long time, and still has a long way to go. For people with dementia, I suspect it is decades away until people start to do the right thing. These are the ones who are passively stigmatising and discriminating us, and just like passive aggression, it is doing us harm.

 

12 thoughts on “A ‘thriving’ dementia industry

  1. Maureen talks of ‘the mode here’: how they disable the ‘old folks’ here: I have described it asthe ‘Carers Invasion’. We are seeking peace talks. We want to retain our culture not be invaded.

  2. Enough of the “charity speak” eh Kate? I continually see people with dementia raising funds for Alzheimers organizations that otherwise ignore them, bypass them, use them while their employees regularly collect their pay packets.
    And others who continue to widen the gap between those of means and those struggling just to survive, by peddling their latest “innovation”, book or business venture.
    We in the #KiamaDFC hold fast to our independence. I don’t really want to “Walk for Dementia” other than to swell the numbers….certainly not to fill the coffers of a charity that refuses to employ people living with dementia.
    We have to make the changes within our communities, and become self-sustaining. I feel very privileged to be a DAI subscriber and to have access to education, peer discussion and new friendships with people living with dementia. If I wasn’t restricted to a public pension I’d gladly contribute to the cost of DAI’s work. All I can do is give some time & thought to using my professional skills as effectively as possible, to help create what’s lacking in our “dementia world”.
    Hugs to you. xx

    • It’s not just the charities, but more and more individuals in business, are ‘engaging’ with a few of us, then using this engagement to get funding, raise their profiles, and ultimately, grow a business. It is does not fit the WIFFM Principle for people with dementia in the bigger picture, maybe short term yes, but long term, it is simply a business to them, (yes, even many who volunteer for pwd services and support as this helps their profile) and then, if we dare to disagree to something, or want things to be different, we are dropped and scorned…

      • Kate, these past 2 years have seen so much change and shifting sands in how “dementia awareness” gets spread around….and for private profit.
        I’m interested in public service provision and the collective fight for human rights. As to the others , ODFO!!!
        It’s hard though to see who the users are, as I’ve recently learnt most soberly.
        Michael, spot on – the revolution continues….

      • I’m with you on that… and people with dementia are so easily ‘sucked’ in, as they come across as wanting to support you, engage you, and make such a fuss of you, and we (collectively) have been so isolated, stigmatised and discriminated, we fall into the trap as we’ve been so lonely…

  3. As DAI’s Human Rights adviser but also in my UK work, I preface anything I write or say by asking each person to read one of the books written by people living with dementia – yours, Richard Taylor’s, Christine Bryden’s and Helga Rohra’s – at last being translated into English. I have translated her Introduction to “Out of the Shadows: Why I advocate for people living with dementia” if anyone wants a pre-view!

  4. Yes, yes, yes. Well spoken: “If those who proclaim to be inspired in their work by someone with dementia, and continue to promote their businesses using their relationships with us, yet do not start to employ some of us, or who ‘engage’ with us but at the same time cause us to become a fractured community, then I will not believe their intentions to be completely honorable.”

    We are both; you, a person with Dementia (PWD) and me, a person with Dementia best interests in mind (PWDBIIM;) at the beginning of the forefront for change much like so many other groups (Black, Gay, Women, Disabled, etc.) who have fought for their rights, gained attention, made change … and still continue what seems like a never ending battle.

    Keep on Keeping On Kate Swaffer!

    • Thank you Michael… this one has been going on for 20+ years, and many of us have been on the advocacy and activism train for many of those years, and still, more often than not it is “about us, without (1 or 2) of us”

The only thing missing in this global conversation is YOUR voice... Thank you.

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