There is emerging evidence for, and good evidence for risk reduction, such as life style changes as a way of preventing a diagnosis of dementia. It is, for me and many others living beyond dementia, in spite of the sector telling us to go home and give up, very exciting times!
Common sense certainly says to me, that we must also take the same approach for someone who is diagnosed with dementia, and start to use non pharmacological and positive psychosocial interventions for dementia immediately upon diagnosis.
Who knows how many of us could possibly even stay at work, with immediate and intensive rehabilitation, in the same way we would have been supported to if we’d had a stroke or any other brain injury?!
When I was first diagnosed, and for some time after, I almost accepted the Prescribed Disengagement® dished up to me. Thank goodness i didn’t and it mostly thanks to being at university, and being directed to their disAbility Advisors, I found another way to live with dementia
One with support for disAbilities, and a focus on the assets I still had, rather than simply being told to go home and die. I then 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 in reality, it was unethical not to have been offered support to live with dementia.
Luckily for me, 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, pushed me to find ways to write, stretching my brain to learn new things, which quite often these days, I don’t remember, 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. So much more fun than Bingo…
There are three books I consider more than recommended reading for 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 proven 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 that 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 beyond dementia. They may not be a cure. Many 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.
Earlier this year, I was talking to Professor Dimity Pond, an academic general practitioner from NSW about some of the interventions I use, and after some of her own research into the value of speech pathology for dementia, 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.
My physical rehabilitation includes almost daily brisk walking for 60 minutes, Pilates, strength and balance exercises, speech pathology, hydrotherapy, 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 stronger than paracetamol, and so, only very occasionally take anything for pain.
The slide above is of the ‘Social/disAbility Pathway of Support’ I have been working on for many years, and used recently at a Better Practice conference in Brisbane. Feel free to use it, referencing it to me – but also please let me know if you do, as I do like to know where my work or words end up. As I work on it further, I will also add more about it here as well.
We really must find ways to improve the post diagnostic pathway of dementia care, at least in line with someone who has had a stroke, and I am delighted there are one or two professionals working on this as well now. Thank you.
Finally, 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 beyond 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 seem to like their position of power and supposed knowledge about our experience, being challenged. That’s ok, I’ll keep speaking up for what I believe to be a more ethical pathway of support for all people with dementia.
Recommended reading:
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.
Living Beyond Dementia™ 
Hi Kate, I just read your blog and wish you the best of luck it getting the word out. There are so money things we can do to minimize. I was a little surprise you had nothing about nutrition listed. Check out Low Carb, Hi fat lifestyles, Diabetes type 3 and research books by Gary Taubes on nutrition and Alzheimers. It is a really big reality check.
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Thanks Cheryl. I am definitely into ‘healthy’ nutrition, low/no processed sugar etc, but it is such a hot topic with so many, and there are a million+ people out there telling others what to do with their diets, I have decided not to be so vocal about what I do! The scammers pick up on these terms here and on Facebook and other places, and come along and try to sell so much stuff to people with dementia as ‘miracle cures’, it is a challenge even commenting openly here! They ‘Friend’ us, and we accept as we think perhaps we have just forgotten them, and then they start attacking out friends and trying to sell us the miracle diet, the miracle cure, etc…
I know for a fact, that going to NO processed sugar helped my cognitive abilities immensely, and I do live on a low carb, low fat, etc diet, and benefit greatly from it. I take some supplements, some herbs, and exercise often. Low blood pressure, low cholesterol, a diet that does not encourage diabetes, and keeping my weight at a healthy level are all very important factors, but not everyone is ready to hear this.
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Loved honesty of your post. Was only talking to a staff member in nursing home today and said that the way most nursing homes run makes residents worse, Taking away their life skills by making them dependent. They quickly deteriorate living in care.Lived in locked premises, everything done for them, stop residents doing things you have done all their life. They don’t even let people cook a piece of toast at most places.You can’t walk outside in the streets, might be uneven and you might fall over. People who live with dementia should be allowed to live their life with risks, granted independence, not be waited on hand and foot. I am always wondering what companies want ? I fear most places never really want to deliver person centered care. Families want the home to be like a resort, What does” home like” mean? I would love to see a nursing home modeled on a rehabilitation unit. I,ve had the pleasure of discharging two residents home from nursing home. I long to see change but not many appear to be on the same page. I feel the industry is moving backwards with the dependency model of care we provide now.I love the idea of life in the village!! in Sweden. They can ride bikes, shop and live life as if home. Well done. Village was set up by two ladies who had families in care. Great to see these wonderful ladies take initiative.keep up with great posts and work. Thanks you for sharing
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Thank you Jennifer…
I think this is why I am currently focusing on our rights under the UN CRPD on my other blog at the moment!
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Very nicely written, Kate. First & foremost, may God bless you in your health and your work. As a fellow RN, I agree with being your own best advocate. It is paramount to your health. There’s no question that the healthcare system in the US is broken. We pay tons of money to companies, so that they can dictate to the consumer what is covered and what is not. As you know, it’s about big money behind large lobbyists pushing their services/products. It would shock most to know that it is NOT about their health, but rather chemical/pharmaceutical companies making larger profit margins. Our health is controlled by others (i.e. Dr’s, insurance companies, etc) and we need to take the reins and control your own destiny. Like you, I stand up for myself, wife, & parents, when in the Dr. office/hospital!
My wife has early (63) onset dementia that has taken 2- yrs to conclude. Very fast deterioration, they haven’t given a definitive dx, other than knowing it isn’t Alz, but unspecific dementia. I do my own research on everything, and I’ve learned a ton. From what I know, she has Lewy Body Dementia, of which is only dx on autopsy. I’m digging into the forefront of the current research, thinking there has to be a way to scan the specific protein that causes LBD and therapies that show promise. She has had MRI’s, bloodwork, and even a spinal tap that has CSF protein present, (and other red flags). Next appt. 12/7 to discuss results and admission for a brain autopsy. Not that it will change anything for her, but maybe what can be learned for future therapy. I agree, the sooner the dx & tx, the better!!! I’m her 24/7 caregiver @ home. Would be interested to find the reference citations you made @ the library, or store. Thank you for the article and your advocacy.
If I may point to one thing not mentioned in your article (I’m not being critical), but a persons diet is also paramount to the prevention of disease. Often overlooked, eating fresh food, sensibly, is paramount. Cannot even read most ingredients, much less know what they are/or do to your body, of todays processed foods. Kinda like putting diesel fuel in a gas car and expecting it to run, much less running at peak performance!
Thank you, again.
(Boyd) Jay Conley
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Thanks so much for sharing you and your wife’s life with us, and yes, I totally agree re food being part of the picture. It is definitely part of the latest research on the three big Risk Reduction factors (lifestyle factors, which include reducing obesity, B/P, cholesterol, diabetes risk factors, and improved nutrition) as well as reducing isolation and increasing NEW learning. Take care, and if I can support you at all, let me know. We are adding information, albeit slowly to Dementia Alliance International – http://www.infodai.org – and I have a page set up, without content yet, on the different types of dementia, hopefully to be added to after Christmas. Take great care…
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Awesome Kate, LOVE this one a lot! This speaks right to what I am after…the right supports for us. And, of course, written as beautifully as only you can. So looking forward to your book. 🙂
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My pleasure Faith… hope it helps you and others! xx
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Keep on posting I need your insight to help me as a Care Partner.
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Of course, at your service Paul!
I wanted to be sure to write at least ONE blog about LIVING BEYOND DEMENTIA™ here each month, and realised my time was almost up!
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