Tag Archives: Richard Taylor PhD

Wise words from the heart of Richard Taylor

OLYMPUS DIGITAL CAMERAAs the editor for DAI, this week I am posting a blog written by Richard Taylor PhD, insightful as always, and full of honesty, bravery and wisdom. I personally have been a subscriber to his newsletter, which has not been written so regularly since he was diagnosed with throat cancer over 18 months ago, and I know I have missed his writings. I suspect he has missed his writings! Thank you for sharing yourself with us again Richard.

Richard speaks:

Hello, within the past couple of weeks I have stumbled across a new pocket of clarity of thought residing somewhere between my ears. I don’t know where it came from, I don’t know how long it will be here, but I do now realize I can’t think things through, I just sit down and start up my old selectric typewriter and I type. Formerly, I mulled over ideas, tested them against what I knew, researched my conclusions. Now I just sort of put a clean sheet of paper into the machine and start thinking out loud.

It feels sooooooooooooo good, to have some of my mojo back. Maybe it’s the new vitamin B-12 shots at work, maybe, maybe, maybe. I am trying to enjoy it, use it while the door remains open. I am now writing lots and lots, responding to other’s writings lots and lots. Most times I am eventually clear in my message/thoughts/position. Sometimes I realize I am not.

Along with a new found spontaneous focus/attention has come an ongoing nagging awareness that everyone does not share my sense of urgency in addressing the absurd/counterproductive/dehumanizing/neglectful manner through which the world is responding to the fact that half the world is now much older than the other half. And with that fact comes a divide in priorities, spending, political conversations, and from my point a view a very troublesome divide in how we treat/respect/appreciate/understand the respective other half of the population. Technology does not seem to have helped pull us together. Governments, mostly still populated by one half of the population, but increasingly elected by the other half, seem to respond to divide by dividing us more, and more and more.

But, as usual I digress/wander/repeat myself/reveal myself.

The sense of urgency inherent in realizing the dehumanizing stigmas that are currently being promoted by the very organizations who goals should be to re-humanize dementia has been refocused on how quickly can we find a cure, not how quickly can we improve the lives of folks living with the symptoms of dementia. Great minds, great government’s, great universities, great NGOs, giant drug companies who all are driven by their own needs to survive and holds lots of conferences in nice places and make speeches about going to war to defeat dementia – each and mostly all of these forces have aligned with each other to raise more money and support to “cure” dementia (actually Alzheimer’s to use their word). This wrong is wrong in oh so many ways, I can’t count them.

But back to yours truly and the reason I write this. I need to take some time away from the chase, away from the darkness, away from the dark forces. I need it for myself to fully enjoy these moments of clarity. I need it to make the semi annual readjustment to the fact that my own sense of urgency is not shared by many, many others. That is not to say we don’t agree of goals, it’s just the objectives/the strategic planning/the time lines/the willingness to invest more/to readjust priorities/to balance between thinking globally and acting locally/the devil that resides in the details of living life to its fullest and its best – these details need to be addressed, now. We need less “think tanks/groups/pieces” and more action plans. We need more evidence and reasoning, and less visioning.

Yes, awareness is spreading even as the darkness is promoted. Self advocacy seems to reside in the hearts, minds, feelings, and utterances of more and more of us living with the symptoms of dementia.

Yes, on the whole the world and some individuals are better off now than they were five years ago (speaking of folks living with dementia).

Yes there are pockets/moments/places/people/and more and more mostly smaller organizations who understand us, get “it.” In the long view of things, in the long run, things are still mostly slowing down in the wrong direction and/or speeding up in the right direction.  It is fitful progress subject to lots of changes and pressures. For myself I am convinced there is not enough progress to make much, if any difference in my life. Perhaps in the lifetimes, the demetia times of my grand children – but it is only a perhaps. The current steps in the right direction are matched almost exactly by stronger (if fewer) steps in the wrong direction.

To say, to feel, to act like there is no need to hurry, no need to keep building pressure, resisting the forces of resistance is ill advised. We can quickly lose our gains with one set of election results, with one distracting international event, with a thousand other distractions and priorities. We shouldn’t have to compete, but we do.

I’m taking a month off/away/observing/writing/hanging on – preparing for what will probably be my last hurrahs come Fall and next Winter.

Thanks for wandering around with me and this posting. Back soon – with more.

Richard.

Copyright: Dementia Alliance International and Richard Taylor PhD
Editor: Kate Swaffer

Alzheimer’s from the inside out, by Richard Taylor PhD

This is third of our weekly blog series. This week we are highlighting another of the presentations made at the 29th Alzheimer’s Disease International conference in Puerto Rico, this time by Richard Taylor, one of our Board members and a co-founder of DAI. It was sheer brilliance, and was the only oral presentation to receive a standing ovation at the whole conference. One highly respected researcher who has attended 27 of the 29 conferences had never heard Richard speak, even though he has usually presented at least three times for the last five years, and was not only surprised, but shocked by how good it was. I too was shocked, by the fact this person had never bothered to come and listen to one of the sessions by people with dementia before, especially someone as noteable as Richard, and who has been involved with ADI in a very positive way. I suspect they have much more to learn than we do, in their work towards making the lives of people with dementia better…

Here is the video recording of Richard’s presentation, now on our YouTube channel.

Below is the basic script from Richards presentation.

“What I’ve learned.

Hello

Thanks

Less about what I’ve learned and more about out what I have experienced.

We all experience life differently………..We all interpret our experiences differently

But we are similar in both our experiences and interpretations. Where we are different is in what we do with these.

Translating life and integrating it into living

I am at a transitional tipping point.

1. There is such a feeling as kindred spirits among people living with dementia

2. There is such things as universal stigmas engrained in our thoughts and feelings/ but not necessarily in our experiences.

3. These stigmas defy evidence, reasoning and even experience

4. They become the bookends, the dark glasses, the perceptual filters of our living, of our caregivers, of other professionals who interact with us.

5. These stigmas limit, prescribe, and describe how we think, feel and act with and towards each other.

6. Stigmas should be addressed head on.

7. We all must stop perpetuating them, reminding others of them, using them to meet our own needs.

8. The language, the symbols, the words we use are contaminated, intentionally and unintentionally redefined to meet our own needs.

Cure/Alzheimer’s vs. dementia and all the other forms/sufferer/patient/person

9. This must stop.

10. We shouldn’t/can’t justify the means used by the well-intended means (which knowingly harm others, make their lives more difficult, and yes I’m talking about people living with dementia who are victimized/used/abused by these means to meet good/I would say any ends.

11. The use of focus group results to design fund raising appeals must stop, and must stop now.

12. Where are the focus group results which come from groups of people living with dementia, rather those in authority, those most likely to donate, and those…?

13. If you meet/know one person with dementia you only know one person worth of dementia.

14. The only real experts concerning what is like to live with dementia of this or that sort are those who are actually living with the symptoms of dementia of this or that sort.

15 The strategy of we will cross those bridges when we come to them is a counterproductive strategy.

16. Like many of the meds we now take, its side effects can be worse than the symptoms, it masks the real problems, it solves nothing (just delays and complicate it). And generally increases anxiety, not reduces it.

17. Now (a month after diagnosis) is a time to have a meeting of the family minds and hearts.

18. The burden of change is more on others than on persons living with dementia.

19. Our needs do not lessen, nor are they reduced in number as the number and severity of our symptoms increase.

20. We were, are, and will be up to about two minutes after we draw our last breath whole human beings.

21. We need enablers, not disablers. Sometimes we need reablers.

22. We need support to stay into today.

23. Stay in the past is not the highest priority for any human being

24. Reminiscence is over rater, over used, and over depended upon by carers to assure themselves that we are still here.

25. Becoming engaged, staying involved in a purpose, in purposeful activities is a key to fullfilling living out our lives as happy, fulfilled individuals.”

Thank you Richard.

Editor: Kate Swaffer

Copyright Dementia Alliance International