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.
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