Yep, there really is big money in dementia

sitting on a gold mineI’ve been listening to an author talk about a book she has recently published on her mother’s dementia based mainly on many recorded conversations they had about her experience of living with dementia, and she said at one point that she is “Sitting on a gold mine”. I am sure the book is terrific, and listening to the reviews of it today, it does sound like a more positive book written by a family carer, but that particular comment is deeply concerning.

As my blog There is Big Money in Dementia written some time ago suggests, there is indeed big money in dementia. It concerns me greatly the people with this disease are being exploited so much, even by those who mean well. It is not only Big Pharma, service providers and commercial organisations (e.g. Luminosity), but many of those very people who are ‘caring’ for us.

I’m sure many of the movies, books and other media out there mean well, and do some good, but the reality is, they are not necessarily the authentic voice of people with dementia, but the person without dementia’s interpretation of our experience, which they so often offensively refer to as ‘suffering’. It is also something to worry about, that people with cognitive impairment are ‘giving permission’ for their stories to be written and talked about and obviously I also have some concerns about the ethics issues around that.

I suppose… sigh… these are some of the reasons I continue to speak out.

23 thoughts on “Yep, there really is big money in dementia

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  3. Dear Kate, and those who have responded to her blog comments;

    My name is Cathie Borrie and I am the author of “The Long Hello”. As you know, I was the speaker in yesterday’s blog, moderated by Laura.

    I was very sad to read your comments, Kate, and disappointed that you did not bring up your concerns during the 90 minute public webinar, which would have been the respectful place to do so. I would have been happy to address any of your concerns, openly and honestly, and welcomed other’s concerns as well in a public dialogue.

    It is particularly troubling that your “warning bells” were going off before the webinar even started – since you do not know me, you did not know my mother, and you have not even read the book. I fear you made assumptions about me and my motives, and pre-judged me, Kate, something I hear the dementia community rallying against constantly, for example through Norm McNamara’s moving and thoughtful messages.

    For point of clarification, I used the word “goldmine”, in the context within which that word’s definition includes: “A source of information” – to describe what the tapes of my mother’s sacred words mean to me – personally, emotionally, spiritually.

    For anyone who has never written a book, they will not know what that world looks like. About 98% of authors do not make a living from the sale of their books. Publishing houses often do not recoup the investment they made in order to get the book published. This is the reason that many publishers go under, as do book stores. Writing a book, unless you are very famous (think JK Rowling and “Harry Potter”, or Steven King), is fool hardy at best if you think it will pay the bills. It is, for writers of any book, simply a labour of love. It took me 5 years to put “The Long Hello” together. I had it self-published for 5 more years, and I am still in debt over that venture. I have not yet earned anything from the January 6th 2015 re-release of the book. I would be very happy if I actually ever broke even from my costs, but this may not be realistic.

    The point has been brought up about language and why I did not bring up “dementia friendly communities.” Perhaps people do not know this, but I am not an educator, or an administrator, or an academic, nor do I work for a non-profit, or the government, and therefore, can speak only of my own experience with my mother, and do not pretend to be qualified to speak about many subjects of importance to the dementia community.
    I am, simply, as Laura introduced me, someone who partnered up with her mother, taped our conversations, and then offered that to the world in the form of a book.

    You say that movies and books are not the authentic voice of those with dementia, but “The Long Hello” is substantially my mother’s beautiful voice, as was discussed in the webinar.

    When I mentioned “suffering”, it is because it would be dishonest, and patronizing to my mother, not to do so. In the same way my friend Ken suffered with multiple sclerosis – for example, when he learned he could no longer read; or my friend Allen suffered when, as a photographer, he found he no longer had the dexterity to use a camera, so too did my mother suffer when she longed for her parents. The suffering I was referring to is part of many diseases and experiences, but they form only a part of it, and do not define the disease nor the person. This is patently clear in “The Long Hello.”

    But Kate, and other responders, what is most heartbreaking of all is that you assumed and judged that I exploited my mother, and her experience. She loved being taped and said so many times. She had always wanted me to write and was thrilled that I was finally doing so, and that I felt her story was important enough to tell and to share. My only consolation is that she is no longer alive to know what has been said. Perhaps if you had afforded me the courtesy and respect of an open and honest discussion, some of these concerns could have at least have been addressed, if not resolved.

    • Hi Cathie,

      Whilst I did not mention you personally in my blog, it seems you have taken it so. Understandable, but not the whole picture from my perspective. Regarding being disrespectful by writing the blog, and not discussing it at the Webinar, have you considered I may have been having a bad day with speech (I was), and also find if I am upset or concerned about something, it is much harder to be coherent in speech, one of the main reasons I blog and write. So, my sincere apologies my disabilities caused you to feel disrespected. As far as affording you the respect of an open discussion, I cannot think of a more open place to be discussing it. I did, as you know, write to you via a private message on Facebook, which you did not reply to.

      I was glad to read your mother was very happy for you to write your book, and am sure your writings are caring and sensitive. My concerns remain though… and many of us living with a diagnosis of dementia, find this constant public attention to family carers writing or producing plays and films of our experience mildly exploitative and although it might be about the authors family member, the messages are publicly adopted as applying to all of us. On the topic of language, yes, we all suffer from various diseases or events in our lives, but these days, all I can say is it is becoming common practice now not to refer to people with dementia as sufferers – in the same way we would not refer to people with other disabilities as retards or retarded. Yes technically we are retarded in some way, but we find that word, and the word sufferer, disrespecful.

      So, I have had one person with dementia ask me via email to delete my blog. I have a large number of people with and without dementia say they agree whole heartedly with my blog – if you were to read it as a general view about the exploitation of people with dementia, rather than taking it personally you may also see it that way, but maybe not. I have been publicly abused on Twitter for having a different opinion, accused of my feelings being wrong, told I misinterpreted things, and basically disrespected for having a different opinion. All I am capable of is having my own opinion, which with more information, or explanation and discussion, can change. I am willing to take the flack, here, on Twitter or in person, as believe I have every right to my own feelings and opinions.

      We all prejudge on occasion, and I apologise if I have done this to you; you also have pre judged me.

      Best wishes,
      Kate

    • God I’m sick of carers, self made martyrs, opinionated self obsessed experts who will talk at any length about how it is or is been for them.

      How they have been long suffering, but haven’t been brave enough to let people who are living with dementia to have a voice of their own. They are quite happy to send their partners into other rooms while they sit together and talk about their partners futures and make decisions about them.

      If you do not have dementia and are not living with dementia your opinion makes you opinionated, no more no less, and a barrier to the fundamental change that this area needs.

      Currently their are over 47 million people with a diagnosis of dementia who have almost no voice and probably 3-4 times that number who talk over the top of them and tell them what to do.

      People who are living with dementia need to be given the space to be able to speak, write and make comment about how they live for themselves, what it’s really like for them.

      If people would like to read about what it’s like to live with dementia, about bravery and positive approaches by all means read “Alzheimer’s from the inside out”, by Richard Taylor PhD, “Who will I be when I die” or “Dancing with Dementia”, by Christine Bryden. Authentic accounts of what it’s like to live with dementia.

      Writing or speaking about the way it was doesn’t help to create a better future or the way it should be. It just scares the shit out of people, increases stigma, silences the authentic voices of people living with dementia.

      Which is probably OK for people who want to want to tap into the goldmine that is dementia.

  4. Until we shift our consciousness to a higher level this will continue…Money still rules the planet and until love and caring for one another takes its place, we are doomed to endure more of this….it is up to each of us to change ourselves and our beliefs and eventually those around us will do the same…It is all very sad!!!! Blessings and love… VK ❤

  5. Hi Kate,

    This post struck a chord with me. I don’t know any of the companies you mention so can only give a personal perspective.

    A friend and I have been developing ideas for software tools to support people with dementia and their carers. Progress has been hit and miss as we have been doing this whilst trying to bring in income. We also have the bigger issue of validating our ideas and making sure they are worth a continued investment in everyone’s time and money.

    I’d like to think we could leave behind something really significant and worthwhile for people with dementia but that probably won’t happen unless we can bring others on board and fund the development properly. In a perfect world we would create a free service funded through sponsorship and advertising along the ones of a “Facebook” approach. We intend to channel a percentage of profits to support dementia and cancer charities.

    Now of course this could, and in all likelihood will, be pie in the sky! However, if we could make it happen, would you say that we would be exploiting people with dementia? Where would you draw the line?

    Steve

    • Good point Steve, and I am not sure where you draw the line. What I do know is that a great many people with dementia feel tired and mildly exploited by being written about by people with out dementia all the time, and it is a very hot potato these days as dementia is one is the ‘new’ focus around the world. Of course we need to heard stories, and we need to have products developed, research done, and so on. In the case of the author yesterday as you will see in her reply to my blog which I will approve shortly, she honestly believes her book is the authentic voice of her mother, and had her mothers consent and best wishes to do it, so perhaps I was wrong. Always willing to see another side of the coin, and admit sometimes I get it wrong… but I do hate being slagged publicly just for seeing things a different way.

      • Hi Kate,

        I have had one relative and a close colleague who have died as a result of dementia. I have also attended the UTAS MOOC as you know, but I still wouldn’t pretend to understand how people with dementia actually feel. However, Cathie was obviously much closer to her mother and I found her response to be sincere.

        From our perspective, developing software, a key part of what we would like to do is give carers and people with dementia the tools to tell their story together. There are of course many story telling web sites out there already but it seems to us that there are things missing that leave them not much more functional than a blogging platform like WordPress – not that there is anything wrong with blogging of course!

        We would never want to be seen as exploiting people with dementia, hence picking up on your post. I wonder whether you would be open to considering some of our ideas if they ever see the light of day? It is possible that with your feedback we could better shape our ideas and business model in such a way that it is fair to everyone.

        Perhaps you could email me privately – but please do not feel obliged.

        Best wishes

        Steve

  6. Perhaps authors reaping the benefits of those less fortunate should look at the Morcombes as an example. All profits from the sale of the book ‘Where is Daniel’ went straight to the Daniel Morcombe Foundation. Then the words written would be worth far more than gold.

  7. It seems to me that the only people not getting support or having their snouts in the ‘dementia funding trough’ are the people with dementia. I’ve previously described these people as bees to the honey pot, however the humble bee deserves to be compared to more honourable company. BuB

  8. Kate, You have a dedicated audience with first hand experience of dementia, yet there are not enough positive experiences out there for the general population to be more accepting of the people living with dementia. Whatever the means, get the message out there. Jeff

    • Thank you Jeff, and lovely to see you here again. I was thinking about you and wondering how you are just the other day… you’ve been here for so long, I feel like I know you!

  9. I agree with your blog and further to that I thought she was making money from what her mother’s sayings. Cathie also commented on how she speaks outabout correct terminology when speaking about someone with dementia, Not once was dementia friendly communities mentioned. Is this wright or wrong. I believe it is wrong.

    • Agree with you Mick… the whole thing was more than disappointing I thought, although I’m sure some people thought the opposite. As they say in politics, a 50% win is a landslide one!

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