There is emerging evidence for non pharmacological interventions for dementia, and evidence for life style changes as a way of preventing a diagnosis of dementia. It is, for me and many others living better with dementia, in spite of the sector telling us to go home and give up, very exciting times! Who knows how many of us could possibly even stay at work, with immediate and intensive rehab?!
Some new, but very dear friends in Kiama, Veda and Lynda asked me to share the self prescribed rehabilitation program I maintain, which is now encouraged by my neurologist in North Adelaide Dr Casse who also offers intensive brain injury rehabilitation to his other patients with dementia; my Neuro Physiotherapist now includes rehabilitation for dementia in the Masters of Physiotherapy program he runs at Flinders University. I will write a blog about this as well, very soon.
When I was first diagnosed, and for some time after, I ‘almost’ accepted the Prescribed Disengagement dished up to me. Thanks to being at university, and being connected with their Disability Advisors, I found another way to live better with dementia. One with support for disabilities, and a focus on the assets I still had. And then I decided to think about it with my ‘nurses hat’ on, and wondered why I had not been offered intensive rehabilitation. It seemed logical to me, and it was unethical not to have been offered it.
I’m currently writing it up as an article for publication, but for now, this blog is at least a start, although I apologise it is a bit rambling… definitely too tired to tidy it up though!
At the moment I am doing a short MOOC course, Rethinking Ageing, through the Melbourne University, and one of the participants, a speech pathologist said yesterday that language changes are a clear sign of a dementia process starting and these professionals are very important in stroke recovery. Of course, I say, so why not dementia????
Anyway, back to this blog about rehabilitation. I continued to study at university, which I believe is one of the keys to my slower deterioration of symptoms. Not meaningless brain training games on an iPad, but really interesting courses that stretch me to think really hard, stretch me to write, stretch my brain to learn new things, which quite often these days, I don’t remember what I have learnt or read about, but that is not the point.
For me, studying something I am really interested in is a truly engaging, meaningful and purposeful activity, and excellent neuroplasticity training. Much more fun than Bingo.
There are three books I consider more than recommended reading anyone who wants to change their life, their thinking, and improve their health, as follows.
Norman Doidge’s book The Brain That Changes Itself, offers significant anecdotal evidence we can rewire our brain. I firmly believe that. Dr Bruce Lipton’s book The Biology of Belief: Unleashing the Power of Consciousness, Matter and Miracles, brings evidence to light that it is possible to change your cells through belief. I also believe that, and have since my early 20’s. Dr Lipton has proved it. And finally, Dr Martin Seligman’s book Flourish: A Visionary New Understanding of Happiness and Well-being is on changing our thinking, and flourishing by being more positive. I met him a few years ago, and told him he had stolen my manuscript! When I read this book, I felt as if I had written many parts of it, as I have been on the path also since my 20’s.
I have written and presented many times on the non pharmacological and positive psychosocial interventions I use to live better with dementia. They may not be a cure. Most of them have little evidence (yet) to support them. However, they do ensure my life is more positive, meaningfully engaging, and productive. For me, they are The Olympics of my life. Last week I was talking to Professor Pond, an academic medical practitioner from NSW about some of the interventions I use, and over the weekend she did some research into the value of speech pathology for dementia.
In an email yesterday she said: “It was very interesting talking to you about the speech therapy rehabilitation around word finding and so on which you have found so helpful. I have done some reading around this over the weekend and can see that there may be a sound biological basis for it.
Of course you are right that there are other non pharmacological interventions that are helpful as well.”
I was delighted she took me seriously, and did some research into it, as she is currently involved in writing guidelines for dementia. This blog is a list of the interventions I was engaging in back in 2013, which has been revised and added to significantly since then. I will elaborate a little in this blog, but will attempt to detail more fully the more important ones over the next few weeks.
My physical rehabilitation includes almost daily brisk walking for 60 minutes, Pilates, strength and balance exercises, speech pathology, hydrotherapy (although I am not currently doing this as the brain injury unit was closed down by our useless government), as well as Transcendental Meditation, Mindfulness, and self hypnosis for pain management. The reason for the last two, is that I live with high levels of chronic pain, and do not like the cognitive side effects of medication much stronger than paracetamol, and so, only very occasionally take anything stronger.
This is a slide which I used at a National Dementia Congress pre conference workshop in Melbourne in February on models or post diagnostic pathways of care; one is the current model of care offered to people with dementia, and the pathway on the right is the model of care or post diagnostic pathway I have followed.It highlights well what is wrong with the current post diagnostic pathway. It is updated, from one previously published.
We must find ways to improve the post diagnostic pathway of dementia care, at least in line with someone who has had a stroke.
People with dementia have an ethical and moral right to a post diagnostic pathway of care.
Finally for tis blog, Advocacy is one of the positive psychosocial and non pharmacological interventions for dementia that I use, almost daily, and when I look around the world at who is living better with dementia, and who is speaking out and advocating, they are often the very same group.
I strongly recommend speaking out, and up, for yourself, especially if you have dementia. Do not let people without dementia dictate what is best for you, nor tell you how you feel.
Of course, there are quite a few feathers being ruffled globally, feathers belonging to people without dementia, who do not like their position of power and supposed knowledge about our experience, being challenged.
Doidge, N, 2012, The Brain That Changes Itself, Scribe Publications.
Lipton, B, 2005, The Biology of Belief: Unleashing the Power of Consciousness, Matter and Miracles, Hay House Inc. (This is much cheaper bought as a Kindle book)
Seligman, M, 2011, Flourish: A Visionary New Understanding of Happiness and Well-being, Free Press.