The new narrative of dementia

On Monday night this week, there was a television program in Australia (4 Corners) on the ABC which featured three couples with dementia. I had a reasonable idea it would be full of suffering, although it showed a lot of love and living as well as humanly possible as well, but from all accounts, it was very depressing to watch. Most I know who watched it reported they wept for some of the program, or for some time afterwards.

These stories, whilst important documentaries, keep the narrative of suffering alive, and although this is the reality of dementia for some of the time and much more of it towards the end, as it is with any terminal disease as we start to die, it is not the full story.

Relative to this program, and my brief response above to it, people with dementia have been advocating about being included for over twenty years, but until more recently, the narrative of dementia had not changed away from the discourse of tragedy and suffering.

However, due to those of us who refuse to isolate ourselves or feel ashamed in spite of being bullied and defamed for it, and who focus on what we can do, not on what we cannot do, the narrative has changed dramatically. Thankfully, more often now, many people without dementia have not only started to listen and take notice, they have started referring to it.

But, it seems there really is big money in dementia for people without dementia, as some are now being paid to teach our new narrative.

People with dementia are still waiting to be paid for anything we do…

When I first became an advocate, even the people with dementia who were public advocates were often talking of their ‘devastating dementia journeys’, and I soon realised that the negative discourse had been so overdone, that it was then, and still is 100% unhelpful to us all, and also very unhealthy.

Family members and care partners who have become public dementia advocates have started to use our new narrative, almost  if it is their own, even though some do say it has come from the growing and increasingly loud voices of people with dementia. What I’d really like to see is for them to develop a new narrative for themselves, not use ours; and then to rub salt into our wounds, otherwise known as our disrespecting our expertise, some are also now getting paid to teach our new narrative.

My term Prescribed Disengagement® only has the Registered Trademark symbol on it, because I applied to have it registered, went through a very stringent process, and paid quite a lot of money for it once it was approved. Perhaps I should be registering a lot more of my work…

14 thoughts on “The new narrative of dementia

  1. Kate, can you share some specific examples of what and whom you mean?

    On the issue of plagiarizing, you are not alone. I found a piece of my work being used in workshops by a geriatrician in California after she posted it on her FB page. That was last year and despite several requests she has yet to apologize. Worse, she has the gall to comment on my LinkedIn posts. Makes me shake my head in wonder. I have also seen my SheQuotes memes with my own quotes come back to me (posted on my own personal page LOL!) with the branding removed. So I don’t think it’s about picking on you specifically or on people who live with dementia generally, it’s just unethical and rude people stealing stuff for their own benefit.

    • Too many to share Susan, but now that the ‘new narrative of dementia’, developed by us, is being used by people without dementia, and now who are also being paid to teach it to staff, it is really starting to more than annoy me. Oh well, as long as we get change they say, but why are we not respected enough to be paid for our work in the first place. Instead, people find us a threat, then they start to agree with us, then they get paid for our expertise, or pay others for it. I get about 10 requests a week to provide consulting advice, for others to make money out of dementia, and so far, virtually never get offered any money for my expertise. Hence, I am no longer available for free advice, and instead, imagine I will just be plagiarised even more now. I have thought about simply shutting down all of my blogs, and only publishing through journals or publishers… still on my mind too, by the way. Time for a holiday or a stiff Scotch! (and I don’t even drink that awful stuff!!!) 😉

      • That also used to happen to me in another life. I too got sick of giving away my expertise.

        So, when people started to ask me questions, I simply said politely, but firmly:

        “I would love to help you. Sharing my knowledge and expertise is how I earn a living. My fee is X dollars per hour for consulting or coaching, paid in advance via PayPal. My minimum is two hours. We can go ahead and fix a time once I’ve received the payment. Would that work for you?”

        You can use my exact words if you like. No charge 😛

      • Thanks girlfriend. I have just highlighted your exact response in todays blog… thank you for allowing me to do this for free, it is indeed very generous of you. xxx

  2. The 4 Corners program did have a biased focus. I wondered if it was because Alzheimer’s Australia has recently published a Discussion Paper called Relationships and Dementia, which seems to have a similar theme.

    The story line’s almost exclusive tragic focus appears to reinforce that the medical diagnosis is still the prevailing view and because there is no medical cure, it really is a tragic situation. It is not seeing dementia in all its shapes and forms and what still can be done. It forgets that our brains are neuroplastic and rehabilitation could / should be the focus.

    The program also reflects a worldview that prizes hypercognitive values, as Stephen Post calls them. If we see human beings as having will, intellect and emotion, large parts of society almost exclusively focus on the intellect component.

    Part of the tragedy of the program was its isolating approach to the people involved. While this is often the case, as you are showing, it does not need to be.

    There needs to be another program to show what people like you are doing regarding their diagnosis and what some carers are doing to transcend the diagnosis of their loved one & show times of joy and hope.

  3. Thank you Kate. Shared with my facebook crowd. We need to listen to folk who actually know and not let the agenda become controlled by those who stand to make a buck……

    • Thanks Cath, I’m getting very tired of being asked for professional advice and consulting, rarely being paid for it, then basically being plagiarised in the form of ‘being acknowledged, BUT, not being paid’ for it. It’s the new cash cow for society… sadly! Making money out of our condition and willingness to share our experience of living with dementia!

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

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s