Living Beyond Dementia™

Reversal of cognitive decline 2016

I’ve not been blogging much lately, barely monthly here, and certainly not daily on my other blog like I used to. I suppose though, it is good to report the reason why is I am actually too busy living beyond dementia to have the time!

However I am keeping up with Prof. Dale Bredesens’ latest research, and do recommend you read about it, in particular is if you or someone you know is newly diagnosed with a dementia. This approach may be too late for those in the later stages of dementia, but my intuition, nursing background, own personal experience with dementia and my commonsense tells me it is on the right track.

Get to know how the Bredesen Protocol and the 21st Century approach factor into the reversal of cognitive decline.

You can watch his latest video here: https://www.facebook.com/mpicognition

“Dr. Bredesen has released a follow-up study to his 2014 publication, which first introduced a personalized, programmatic approach to combat cognitive decline in individuals displaying varying degrees of memory loss associated with SCI, MCI, and early Alzheimer’s disease.

In his 2016 paper, Dr. Bredesen offers up ten case studies of participants treated with the protocol for a period of time ranging anywhere from five months to two years. The results show unprecedented improvements in hippocampal volume and quantitative neuropsychological testing.”

Read the 2016 study in full here… or download here: Reversal of Cognitive Decline 2016 Bredesen

Dementia: enabling, inclusive and accessible

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It appears even to me, I am too busy. My commitment to write a daily blog on my other website has failed miserably this year, and my goal to publish at least one per month here has just failed as well! Of course, this does not mean I am a failure!! I am so busy living beyond dementia, some things have simply had to be dropped, and blogging is one of them. Not that I will drop it completely, as find the conversations too interesting on both sites, and my recipe website is also one I occasionally still contribute to, but already has almost 300 recipes.

So, onwards and upwards through the ever so slightly increasing fog, I will contribute here today, so I don’t miss July, even though if I lived overseas, this may still be in June…

This month I want to talk about the term dementia friendly communities, and how I have always believed it needed to change, and although the idea of communities being dementia enabling has been used, perhaps to replace friendly, it has been highlighted that to be enabled is to be ‘rescued’. There has been a very interesting conversation about these terms on Facebook, which I will highlight at the end. Dementia Alliance International has been talking about it as well, and is to publish its first major report in World Alzheimer’s Months this year, on this very topic.

Access is what people with dementia need, with appropriate support for all of our disAbilities caused by dementia, but inclusion needs to be part of it, as does, sometimes, having someone enable you [the person with dementia] to remain active in your community. We need them all, and it is also why I say a dementia friendly community has many more aspects to it than being friendly and raising awareness in the community.

The quality of our interactions and support and care, is by far, much more important for example, than the number of Dementia Friends any one country may have signed up, and certainly more important than how was first with their campaigns or initiatives. It seems too many without dementia are more focused on those things, than on improving our pre and post diagnostic experiences.

In my work with others at the University of Wollongong (UOW), I am involved in a unique initiative to create a dementia enabling university. You can read about it here, but put simply, it is a project to embed knowledge about dementia into every discipline; if we educate the next generation of working adults in dementia and why it is relevant to their own fields, our communities will become much more accessible and inclusive, almost as a matter of course.

“Several universities internationally, particularly within the UK, have extended this focus and implemented the idea of a ‘dementia-friendly university’ in an effort to better address dementia awareness and skills. These initiatives tend to focus on encouraging staff and students to become ‘dementia friends’ (Plymouth University, University of Huddersfield, and the University of Salford) and to make changes to the physical environment so campuses are more accessible and enabling to people with dementia (the University of Salford and the University of the West of Scotland). “

UOW wants to ensure it is not just about becoming a Dementia Friend, or just raising nominal awareness in the community, and more about actually improving outcomes for all people with dementia either in the community or living in residential care. We also want it to move beyond health students, where most of the dementia education now currently rests. I am very excited about this pilot project, and we have other universities wanting to collaborate with us as well, so hopefully this will become a world wide theme and much needed change to the DFC initiatives and DF campaigns currently in place.

This is the very interesting Facebook chat started on 24 June 2016 about the term Dementia enabling (I have removed actual names for anonymity):

DT: I feel mixed about the term, “dementia enabling.” Enabling certainly has a positive connotation of encouraging individuals to develop and grow. But it’s psychological negative meaning often describes dysfunctional rescuing behavioural approaches which in fact may perpetuate or exacerbate the problem for the person being “enabled.” Enabling often means “rescuing” where a person assumes total responsibility or makes accommodations for another person’s conduct (often with the best of intentions), but rendering the rescued powerless. I would hate to think that a person with dementia wants to be “rescued.” Perhaps a better term would be “dementia inclusive?”

Kate Swaffer Very interesting comments DT … I think perhaps we might be better saying Dementia Accessible – as its about the right to support for disabilities and access as others with disabilities are provided, which under the CRPD includes inclusion. Your thoughts ???

DT: Accessible is much better than “Enabling”

LH: The general consensus among the Kiama mob today is that it depends on the context, eg the environment might be accessible but the person might need support, ie enablement, to interact with it.

LH: I think it’s about power and language so I take DTs’ point as well….still thinking on it.

WR: How about “Empowering”?

LH: Ah…but who empowers whom?

NG: I take on board you comments DT. But if you look at the definition of the word enabling, it encompasses all of the alternative adjectives. At the end of the day, words have meaning ascribed to them too. We have to look at the spirit behind what someone wants to express. Regards, Nick

MJA: I think enabling is about providing the scaffolding so that people can access their communities. That is; we need to look at what assistance people might need to live their best life. That scaffolding could be in a practical and physical way, educative, social support or giving people a platform to be heard.

DT: I believe NG and MA, you are missing the point of my concerns about the word “enablers” when it comes to dementia. You are right N, the meaning of words are not found in dictionaries but in people. Hence if you read the following article it may clear up for you my concerns – http://psychcentral.com/lib/are-you-an-enabler/

Are You an Enabler? | Psych Central

Enabling is a term often used in the context of a relationship with an addict. It might be a drug…

PSYCHCENTRAL.COM

GP: Re: my earlier comment, this link confirms the context that I was referring to

GP: An interesting conversation.

As you can see, words definitely get people talking…

Living Beyond Dementia™ can be difficult

This month on my Living Beyond Dementia™ site, I thought it might be important to write about how bloody hard it is to live like this, and how many people without dementia either don’t want us to, or don’t believe it is even possible to live beyond dementia.

You might wonder, why would others not want you to be living well with dementia, or better with dementia or indeed, Living Beyond Dementia™, or whatever is your preferred term on living with dementia not only dying from it.

If I had lost my legs in a car accident though, I would have found ways to keep living, and that would have taken a significant amount of effort and support.

Oh, and rather oddly (!?!), others would have offered me support to keep living.

Dementia is, quite frankly, no different.

Even though I absolutely know it is a chronic, progressive and terminal illness, with NO CURE, why would I not want to ‘fight for my life’, in the same way I would, and everyone else, would support me to do, if I had cancer?

I actually feel like some people without dementia simply want to keep the power and control they have always had, and I also feel for many with dementia, that because their hope was taken away when they were Prescribed Disengagement®, they think there is no point. Fighting for you life with dementia is also like training for the Olympics, and really hard work.

Living Beyond Dementia™ is far more difficult than it looks, and for some, dementia may simply mean getting on with their bucket lists, which is totally ok too.

But for me, I want to work to support my health, which in turn might (I believe has) support slowing the progression of the symptoms. I do know that all of the holistic and healthy lifestyle related things I do are probably not a cure, even though there is emerging evidence to say they are reversing cognitive decline for some.

In countries where euthanasia is legal, very few choose this option, as mostly, people have an innate desire to live and to fight for their lives when faced with illness.

It is complete madness that we are not supported to do that with dementia.

The calm swan, paddling furiously below the surface, actually sinks if it stops paddling, therefore it makes logical sense if we use the analogy for how people continue to function with dementia that we keep paddling as hard as we possible can. And other should support us to do so, with disability supports, and with positive language, and with changed attitudes. We need to, to stay afloat and to live beyond the sadness and stress of having a terminal debilitating disease.

Whatever strategies you would provide for your child if they had dyslexia, or cerebral palsy, or any other physical or intellectual disAbility, or for someone after a stroke or head injury, then think about applying them to help you live with the disAbilities caused by the symptoms of dementia.

Actually, if you have dementia, you and I have a human right to demand them, in the same way all countries provide wheelchair ramps and hearing loops.

Now that we have the United Nations Conventions of the Rights of Persons with DisAbilities (CRPD) very firmly on the global stage of dementia, we will move forward to eventually realising these human rights. I hope in my lifetime, but if not, I certainly feel it will be in my sons lifetime, and I am hopeful, and thankful that I have been partly responsible for making the demand in Geneva last year at the World Health Organisation First Ministerial Conference on Dementia.

Working hard, to Living Beyond Dementia™ has for me, been worth the effort.

Others more newly diagnosed with dementia who try it, and who ditch the Prescribed Disengagement® too, find the same result, and they start to reclaim and reinvest in their own lives, and in living with dementia, not only dying from it. Shite, some days I walk in circles all day, and others I can’t work out what to do in the shower without needing my laminated cheat sheet, but, really, that for me, is not a good enough reason to give up and assume a pseudo death…

Maybe just to annoy Mr Dementia, otherwise known as Larry in this house, or perhaps even a few others, I plan to flourish in spite of dementia...

Oh, and I guarantee long term (it has been short term but intense suffering the last 12 hours), I can guarantee in my life that long term suffering in my life is optional!

Dementia and human rights

On the 17th of March 2015 at World Health Organisation’s First Ministerial Conference on Dementia in Geneva, and as Chair of DAI, I placed the Human Rights and DisAbility Rights of people with dementia onto the world stage.

Last week in Budapest, at the Alzheimer’s Disease International (ADI) Council meeting held prior to their conference, for the second time we made Human Rights for people with dementia history for people with dementia, when all Alzheimer’s organisations around the world agreed to a position paper that was initiated by DAI, and released jointly by ADI and DAI. Read the position paper on the Human Rights for people with dementia here.

There is a lot on the horizon in this space, which will ultimately ensure many more people with dementia are #LivingBeyondDementia, to only dying from it. The May blog will be about the progress of the work of Dr Dale Bredesen, which is all about the reversal of cognitive decline. I am really really really (fingers and toes crossed!!!) hoping he will be a speaker for the first DAI conference in Kyoto next year, when we host it alongside the ADI conference.

Reversal of cognitive decline: A novel therapeutic program, by Dale Bredesen

This months Living Beyond Dementia™ blog (yes, only one again as I am too busy living beyond dementia), is on the following study (Abstract and Summary only included – follow the link to the full study),

Reversal of cognitive decline: A novel therapeutic program

Dale E. Bredesen^{1, 2}
¹ Mary S. Easton Center for Alzheimer’s Disease Research, Department of Neurology, University of California, Los Angeles, CA 90095;
² Buck Institute for Research on Aging, Novato, CA 94945.

Abstract This report describes a novel, comprehensive, and personalized therapeutic program that is based on the underlying pathogenesis of Alzheimer’s disease, and which involves multiple modalities designed to achieve metabolic enhancement for neurodegeneration (MEND). The first 10 patients who have utilized this program include patients with memory loss associated with Alzheimer’s disease (AD), amnestic mild cognitive impairment (aMCI), or subjective cognitive impairment (SCI). Nine of the 10 displayed subjective or objective improvement in cognition beginning within 3-6 months, with the one failure being a patient with very late stage AD. Six of the patients had had to discontinue working or were struggling with their jobs at the time of presentation, and all were able to return to work or continue working with improved performance. Improvements have been sustained, and at this time the longest patient follow-up is two and one-half years from initial treatment, with sustained and marked improvement. These results suggest that a larger, more extensive trial of this therapeutic program is warranted. The results also suggest that, at least early in the course, cognitive decline may be driven in large part by metabolic processes. Furthermore, given the failure of monotherapeutics in AD to date, the results raise the possibility that such a therapeutic system may be useful as a platform on which drugs that would fail as monotherapeutics may succeed as key components of a therapeutic system.

In summary:

•A novel, comprehensive, and personalized therapeutic system is described that is based on the underlying pathogenesis of Alzheimer’s disease. The basic tenets for the development of this system are also described.

•Of the first 10 patients who utilized this program, including patients with memory loss associated with Alzheimer’s disease (AD), amnestic mild cognitive impairment (aMCI), or subjective cognitive impairment (SCI), nine showed subjective or objective improvement.

•One potentially important outcome is that all six of the patients whose cognitive decline had a major impact on job performance were able to return to work or continue working without difficulty.

•These anecdotal results suggest the need for a controlled clinical trial of the therapeutic program.

Blog author’s comment:

What I believe this study indicates is that further studies are warranted to support this anecdotal evidence, and it is excellent to report that is in progress. Whilst this is a very small sample, in view of the fact that until now no cases of reversal have ever been documented by an expert it adds weight to the findings.

People with dementia deserve better, and for these types of studies to be expanded, and I have heard very recently (via a colleague) that Dr Bredesen and his new CEO Thom Mount report a 90% success in 112 patients and that there are soon to be new trials at Oxford and the Cleveland Clinic.

The brain may be able to heal itself

I really really really love people who dare to dream… “The Brain May Be Able to Repair Itself, With Help” by Jocelyne Bloch

#LivingBeyondDementia

One would have to say, I am managing to live beyond dementia, and alongside of it, in spite of the dark days. Last week, my first book on dementia, titled What the Hell Happened to my Brain?: Living beyond dementia was officially released, as pictured here. I am thankful to Shibley Rahman for the image here, as I have not yet seen a physical copy of it.

Two days prior, I submitted another manuscript for a second book on dementia, which I have co-authored with Associate Professor Lee-Fay Low from Sydney University. So, I am not sitting in a corner crying all the time, or suffering all of the time, or not living a productive and meaningful life; my life continues to be busy and interesting.

This has not happened by chance, but has a lot to do with how I have approached living beyond dementia. By eventually refusing to accept the Prescribed Disengagement®™ dished out to everyone (yes, still), and by viewing, and then managing the symptoms of dementia as disAbilities requiring support and strategies to continue to function with, rather than stop functioning because of them, has been paramount.

Continuing to work really hard on my attitude perhaps has been the biggest benefits to living beyond dementia, as on the dark days when having dementia gets too hard, and these days do come along regularly (too often than I would like), it would be so much easier to sit in a corner and cry, and then to keep crying. The PERMA principles do work, and I recommend to everyone, even those of you without dementia read Dr Martin Seligman’s book, Flourish: A Visionary New Understanding of Happiness and Well-being, which I have written about before.

This is an excerpt from my next book, Diagnosed with dementia: What next?

“In order to focus on quality of life and wellbeing, we need to think about the aspects of quality of life that we are dissatisfied with or want to improve. Martin Seligman, one of the pioneers of positive psychology has proposed the PERMA model for quality of life, this may help you in thinking about aspects of your life which you may want to devote energy to.

PERMA stands for

Positive emotions
Engagement
Relationships
Meaning
Achievement

Positive emotions – feeling good, happy, content, satisfied, joyous, peaceful. Research suggests that people who flourish psychologically experience a ratio of 3 positive emotions to every 1 negative emotion. This doesn’t mean that they don’t experience any negative emotion, or only a few negative emotions (they wouldn’t be human if they didn’t feel sadness or anger!), just that they experience three times as many positive emotions. So try and increase the number of positive emotions that you experience every day – do things that make you happy, that help you feel peaceful, that bring you joy or give you satisfaction.

You may want to laugh more, and do fun things. It is not a waste of time or money devoting resources to feeling good, allow yourself these pleasures, it’s good for you! If you find you are not laughing enough, then try joining a laughter club; they can be hilarious fun, and laughing is really good for you.

Engagement – being completely absorbed in activities or experiencing ‘flow’. This means that you are so engrossed in activity that time is irrelevant, as is stress and worry. It doesn’t matter what the activity is – it can be work, or play or an everyday task like sweeping the floor. The activity can also be challenging – like a tricky puzzle. Some people find meditation can help them reach this state, and others use mindfulness training. Any activity in which you are ‘in the moment’ can give you engagement. Importantly, it is best if it has inherent value to you as an individual, and you enjoy it, rather than doing something others think might sustain or amuse you.

Relationships – being authentically connected to others or having meaningful relationships is important; this means that you have intimate, ongoing relationships with people you can trust and rely on. This may mean someone that you can talk to, or someone that you can spend time with doing things together. Spend time nurturing your relationships with friends and family. People with dementia and their families consistently report friends and family members stop calling after a diagnosis, which therefore impacts their health and happiness.

Meaning – having a purpose in life. For many people having meaning involves the service of others – such as caring for your family, or contributing to the community. You may do this in small ways (e.g. making a small donation to charity) or big ways (becoming a dementia advocate like Kate Swaffer and speaking publically about your experiences with dementia and on behalf of others with dementia).

Many people volunteer, and you may find a program which will support your volunteering, or the person with dementia and care partner volunteering together. Some people may also find meaning through their spirituality – praying and being connected to God/s.

Achievement – a sense of accomplishment and success. This contributes to your self-confidence and self-worth. The accomplishments and successes could be big things (I built a boat!) or small things (I made a cake!). Many people like to set goals and working towards them though you don’t need to have explicitly set goals to feel that you’ve done something. If you’re no longer working, hobbies and pastimes can often be a source of accomplishment and success. For instance expressing yourself through art, music, dance or writing.

You’ll see that Prescribed Disengagement™® may result in reduction in the areas of meaning and achievement, and maybe also in relationships, which would mean a decrease in quality of life so it is worthwhile finding ways to engage more, rather than disengaging from your life.

For positive psychology resources including questionnaires to help you evaluate your quality of life domains, identify your personal strengths, and exercises shown by research to improve happiness please go to the website hosted by University of Pennsylvania and Dr Martin Seligman https://www.authentichappiness.sas.upenn.edu/content/about-us“

Suffering is optional

Whilst I have not been publishing each day on my original blog since Christmas Eve, and won’t for the rest of the year, I realised, thanks to an electronic reminder, that I have not published anything here for December.

The goal for this blog when I first set it up in September this year was to post at least once a month on Living beyond dementia™, and so, here goes for the last week of December 2015! Most of all, I want my last blog on this site to be about one of my biggest wishes of all, and one that I truly believe can and will change the experience of suffering from dementia, to one of Living beyond dementia™, for so many more.

There are many ups and downs of living beyond dementia, and as always, the best and the worst of ourselves, and others can surface, especially when the many myths and misperceptions of how one should or should not be living with dementia, or as many still prefer to think, only dying and suffering from it, as is the pathway many insist is the only possible way forward after a diagnosis. Mostly, it is the media and family care partners or supporters who watch us change (not fade away), and who insist we are all sufferers, as that is what happens to them as they watch us change and die, or is what helps them sell their ‘news’. Many who also tell us we have no right to ask for language that is respectful, meaning respectful on our terms and our experience, not their terms or experience.

There are even a few people with dementia who argue for their right to publicly label themselves (and therefore all of us) sufferers, and yes, of course, that must be ok, as we all have the right to express the moments when we suffer. But labelling ‘us’ publicly in this way, is unhelpful, for the many of us trying to live with and beyond, not only die from dementia. It ensures the majority of the experiences of others diagnosed with a dementia, starts from the notion there is only suffering ahead, rather than from the real possibility there is life, and even a good life to live after a diagnosis. It colours the experience negatively for us all.

The Prescribed Disengagement®™ handed out to us all, no matter what age we are when diagnosed is unhelpful, and I also believe to be unethical. It ensures those of us with dementia head down the road of suffering or sufferer and turns many into victims. It also ensures others see us as sufferers and victims.

In an article I read this week in the New York Times, The Real Victims of Victimhood by Arthur C. Brooks, it says:

“’Victimhood culture’ has now been identified as a widening phenomenon by mainstream sociologists. And it is impossible to miss the obvious examples all around us.”

Later on he says:

“Victims and their advocates always rely on free speech and open dialogue to articulate unpopular truths. They rely on free speech to assert their right to speak. Victimhood culture, by contrast, generally seeks to restrict expression in order to protect the sensibilities of its advocates. Victimhood claims the right to say who is and is not allowed to speak.“

In light of this article, it would, I feel, be reasonable to suggest as I have done previously of my belief that the suffering pushed onto us and the taking over by care partners demands we become victims, and then that many of us take on the learned helplessness role, the same thing that happens to small children when we do too much for them. By constantly declaring we are all sufferers, it virtually ensures we become victims and further disables us, thereby encouraging us to take on learned helpless, and become much more demanding of others to ‘care for us’.

It is the voice of others, loudly declaring and arguing that we are all sufferers, and who seem most intent on trying to advocate for us rather than allowing us to speak for ourselves, and accepting that our experience may in fact, be different to theirs, who are doing us more harm than good as our advocates. In doing so, they support victimhood and further disable us; as if the symptoms of dementia are not enough to learn to live with.

So in closing my year of blogging on all of my sites, I will end with this poem A Christmas wish, written and published a few days ago on my other blog. As I feel it is so very important to all of us wanting to live beyond dementia, it is the best message I can leave you with…

Yes, I am suffering…
but only some of the time
not every moment of every day

And, importantly…
not always from dementia
more often from the language of dementia

The symptoms of dementia
do not consume me
one hundred percent of the time

Only some moments
of some days
and definitely not all days

So why then must others
with and without dementia
exacerbate the suffering and stigma

By labelling me
a sufferer
ALL of the time?

Please do not label me a sufferer
This is my one and only
Christmas wish.

Non pharmacological interventions for dementia

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.

Dementia, humanity and flourishing

Humanity simply means the qualities or characteristics considered as a whole to be characteristic of human beings; kindness, charity, sympathy or compassion. My goal is always to be kind, although sometimes my directness may make others feel I amanita as kind as they would like. I continue to work on this…

I have to keep in mind the quote I have added here, as sometimes I feel I have lost faith in humanity some days.

People with dementia too often find that some without dementia do not offer them basic humanity, but instead seem to be filled with a lack of humanity, caused by a lack of education and understanding, and also because of the stigma and prejudice still in the community towards us. A friend wrote some time ago; I just don’t want to think of you as “Kate, with dementia”. I want to think of you as “Kate – the way I find you each day”. This is in harmony with my blog Does the word disability increase disAbility? Too often, we are just seen as people with dementia, and only our deficits focused on.

The number of voices from around the world of people living with a diagnosis of dementia speak out about living behind dementia, and also on what is best for them is rising, but it will take more people with an attitude expressed like the one above for policy makers and the general community to take notice of us all.

We need the health care sector, and the community, to not only support us to die, but to support us to live beyond the diagnosis of a dementia, and as positively as humanly possible.

I’ve found the book by Dr martin Seligman that explores in detail the PERMA principle to be hugely helpful, as well as Dr Norman Doidge’s two books on neuroplasticity and the brain. Finding something of value (to me) to do, is taking longer, and the paddling much more difficult, but is definitely worth striving for.

Hence, I continue to focus on the PERMA Principles:

Positive emotion
Engagement
Positive Relationships
Meaning, and
Accomplishment

I have been using these principles for a long time, and almost every single day I search for more meaning in my daily life and activities, and am working on remaining as positively engaged as possible as I reach for ways to hinder the progress of dementia. I may not succeed in stopping the ultimate progression of dementia, but the positive feelings I continue to harbor help me stay motivated and as happy as I can possibly be, given the circumstances.

In the search for my own humanity, I have found reaching out to others through volunteering has also been paramount to my own emotional health, as the value of seeing the reality that there is always someone worse off than me is empowering and definitely keeps things in proper perspective. I do not want dementia to become the Amway of my life, although I suspect it has in some ways, so getting involved in other things is imperative.

I would also strongly recommend you get a copy of Dr martin Seligman’s book , Flourish:

“Traditionally, the goal of psychology has been to relieve human suffering, but the goal of the Positive Psychology movement, which Dr. Seligman has led for fifteen years, is different–it’s about actually raising the bar for the human condition. “Flourish “builds on Dr. Seligman’s game-changing work on optimism, motivation, and character to show how to get the most out of life, unveiling an electrifying new theory of what makes a good life–for individuals, for communities, and for nations. In a fascinating evolution of thought and practice, “Flourish “refines what Positive Psychology is all about. While certainly a “part “of well-being, happiness “alone “doesn’t give life meaning. Seligman now asks, What is it that enables you to cultivate your talents, to build deep, lasting relationships with others, to feel pleasure, and to contribute meaningfully to the world? In a word, what is it that allows you to “flourish”? “Well-being” takes the stage front and center, and Happiness (or Positive Emotion) becomes one of the five pillars of Positive Psychology, along with Engagement, Relationships, Meaning, and Accomplishment–or PERMA, the permanent building blocks for a life of profound fulfilment.”

Even with dementia, is it possible to live a fulfilling life, and although dementia is in my face every day, it is important to have other things to be involved in to support my ability to remain positive. Building on my own humanity, kindness and goal to be a nice person, I hope by writing about my efforts to live behind a diagnosis of dementia is in some way helpful.

Most of all, people need kindness, and support to live as well as they possibly can, beyond the diagnosis of dementia.

As you can see, words definitely get people talking…

Abstract

In summary:

Recommended reading: