Apparently four years ago today I set up this blog, although it doesn’t feel like my 4th anniversary, as I didn’t really start writing and publishing blogs until the 2nd September 2011, many weeks later. But, I guess it is still worth celebrating, as the seed was actually planted on this day four years ago, and blogging has become a large part of my life.
This blog is so much more than my memory bank now, and is more of a communication tool, a conduit between others interested in not only dementia, but positive living, poetry, humour and a lot of others things! It is where I share the good, the bad, and sometimes the downright ugly!
It is where I write about the things I am feeling, especially about living with the symptoms of dementia, but also I write about the things I feel are a breach of our basic human rights.
It is where I highlight things like the offensive article in the Australian Financial Review, the one where I have still not had a reply to my second and third letter to the Editor. It is also where I question why people with dementia have not been included as key to speakers, in conference that are about them.
I’m sure, there are some who wish I would simply go away, but that is not going to happen, at least until I can no longer write, or function, or die! On the flip side, it is also where I receive a lot of very positive feedback from not only people with dementia, but from others interested in dementia, or family carers or supporters of people with dementia, or those working in the sector wanting to make positive change. I hope by ruffling feathers, by challenging the status quo, change eventually takes place, although on some days, it is hard to believe that will actually happen across the whole sector. We still have advocacy organisations operating about us without us, and researchers or clinicians insistent on categorising us as challenging behaviours…
But we also have a lot of others advocating now, some quite loudly, for change, alongside of those of us living with a diagnosis of dementia. I certainly do not feel as alone as I did, even two years ago.
But, are we there yet, in terms of improving the lives of people with dementia?
This blog is mostly concerned with that, and although we have made some positive progress, we have such a long way still to go… We are still experiencing Prescribed Disengagement. We still are not offered brain injury rehabilitation or ethical pathways of care (IMHO). We are still being talked about or referred to by many with disrespectful and offensive language, and too many still refuse to engage and use the latest dementia language guidelines. Too often, people with dementia are still not invited to present at conferences in the same key-note line ups as everyone else. Big Pharma is still winning, and research for a cure, is still at the cost of research for improving care, or for non pharmacological and positive psychosocial interventions. There really is big money in dementia, and this is so often at the expense of the care of people with dementia, rather than actually improving the lives of the very group they imply they are aiming to help.
Full inclusion and real engagement, is not yet happening. If it was, the organisations advocating for us, and advocating for dementia friendly communities would be employing people with dementia. They are talking the talk, but not yet walking their own talk. This lack of full inclusion simply exacerbates the stigma, discrimination and isolation these organisations say they are advocating to change. The dementia friendly campaigns seem, for now, look as if they are being used for an organisation’s self promotion; “Look what we are doing. Engaging and empowering people with dementia!” One could say, big deal.
It is, to me, very simple; if you want to promote or work towards providing dementia friendly communities, start from within. Full inclusion and real engagement really does equal employing people with dementia. It really is the litmus test of whether an organisation believes what they preach. Until this happens, we will never be there.
Susan, many thanks for leaving the exact reference.
Great you keep raising the point that Big Pharma is still winning, and research for a cure, is still at the cost of research for improving care, or for non pharmacological and positive psychosocial interventions.
Sad though, that I and others still need to!
For me there are so many good things about your blog (and of course yourself!) that I would need pages to list them. Perhaps the best thing for me is that you make me constantly question myself about all things to do with dementia and you always point me in the right direction! Happy Fourth Birthday!
Thanks and hugs to you over there in wee Edinburgh! I miss hearing that little word, oddly… and seeing everyone over there too! xox
Congratulations, Kate, on your anniversary! Your experience, insights and advocacy are so needed! You’ve done a world of good to so many families!
Vicki Kaufmann
Thanks Vicki… xx
I love reading your blogs and often post them on our notice board for staff to read or bring up points for discussion at our staff meetings. It has a far greater impact on staff hearing from someone who is experiencing dementia… more so that any training manual could provide!!!!! Thank you for all you do.
Thanks for your support Karen, and for wanting to share some of my thoughts… if it helps even one person provide, or receive, better dementia care, then I feel truly thrilled. x
It’s interesting that you mentioned employing people with dementia. I’ve mentioned to others that maybe Dementia Mentors should have a job postings section because I have definitely learned that millions of people living with dementia have a lot to contribute. BTW, I’m looking for help with my website, marketing, business management, etc. : )
For all the good organisations like that can do, if they were really serious, they would be employing people with dementia themselves, rather than using them to promote themselves… No idea where to suggest you go for help with your website etc, I guess like everyone else, you’ll have to go to an IT company and pay for help? That is, after all, what the experts are there for, in everything except dementia, as the experts of dementia are still expected to give their advice for free!
I was kinda joking about the website, although I would hire people with dementia, because I’ve learned that people like Harry Urban, Truthful Kindness, and Dave Kramer have skills that could benefit my business. I’m sure there are millions more with dementia who could help with the other business aspects that I mentioned.
sure, I get that. The next step, if of course, paying for this expertise… I have a belief that we have been so isolated for so long, that now, when anyone asks us to give advice, engage, be interviewed, provide expertise for free… we have been so lonely, we do it and feel grateful! This is, IMHO, the wrong way around, and we now need to advocate for others to start truly respecting our expertise by paying for it.
I don’t thinking others wanting services and stuff for free is uniquely a problem for people with dementia. Take artists, actors, musicians, writers etc. for example Hell, take ME for example!
I have invested tens of thousands of dollars in real money and untold time in my feminist-focused websites and social media over the last decade. There’s no way I could ever make back enough to cover my costs let alone make a profit. I fund it all from my own pocket which was fine when I was earning good money as a public speaking coach but not so much when I returned home to care for Mom for which I was not paid.
Before anyone leaps on me for whining, I didn’t want or expect to be paid for my care partnering role, but that choice had and still has a critical impact on my financial situation. Even though she is in a nursing home, I am still with her several hours a day. Again my choice. There are millions of unpaid dementia care partners. That’s also something to think about. I am lucky to have the financial resources to make the choices I have. Others are not so fortunate.
From a 2001 US study:
After adjusting for sociodemographics, comorbidities, and potential caregiving network, those with normal cognition received an average of 4.6 hours per week of informal care. Those with mild dementia received an additional 8.5 hours per week of informal care compared to those with normal cognition (P < .001), while those with moderate and severe dementia received an additional 17.4 and 41.5 hours (P < .001), respectively. The associated additional yearly cost of informal care per case was $3,630 for mild dementia, $7,420 for moderate dementia, and $17,700 for severe dementia. This represents a national annual cost of more than $18 billion.
That was based on 1993 data. 1993. What must the figures be now? What will they be in the future. This disease has the potential to bankrupt the global economy with hidden and real costs.
Further, globally successful business often attain their success on the back of cheap labor. Clothing manufacturers are notorious. Modern day sweatshops continue to exist across the "developing world." The Huffington Post is based on bloggers providing free content – look a the millions Arianna Huffington makes off the backs of writers. Likewise Amazon has created a model in which writers are forced to give away their product for free in order to generate buzz for their book in the hope that EVENTUALLY make some returns.
All of this to say people with dementia are not alone in not being fairly compensated.
Thanks for your input here Susan… my point was not really on the same vein was that though. In particular, I find that people without dementia re providing services for, working towards dementia friendly communities, etc, without including us. Engaging experts, in any other area, would also mean paying them. This of course, would apply to carers of people with dementia, but the advocacy organisations are full of paid staff who were carers, as that is how most of them started.
P.S. the study I quoted is here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1495283/
I’m sure more recent figures are available, that was the first link in my search.
You rock Kate. Yes there is a long way to go. A LONG LONG way.
AND you have been (and still are and will continue to be) a force for good in the process of transformation toward understanding dementia as well as the people who live with it and helping us all to create an environment in which all care partners (regardless of which side of the dementia coin they find themselves on) may thrive and live fully until their last breath.
Wow. A bit of a run-on sentence, but you get the idea i’m sure 🙂
Yep, I get the idea! Thanks, and together, we can and will transform the care of and attitudes towards people with dementia and those of you who support and love us. xox
Agreed on almost all points. Your blog is important to so many as well as “food” for you. Keep up the good work!
Thanks Michael… would love to also know what point)s) you don’t agree on. Love to have more food for thought, always! xox