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Best Practices - What I Have Learned From Kate Swaffer & Others
Posted: Thursday, October 22, 2015 11:02 AM
Joined: 7/24/2015
Posts: 3020

There are some well known people in the world of dementia and Alzheimer's, and I have learned something from them, and the many other, less-well known, people.

Kate Swaffer, Christine Bryden, and Richard Taylor (deceased) had/have a level of support that too few are afforded when diagnosed with anything along the dementia spectrum. The kind of support that supports them as people first. The kind of support that supports them in staying involved in tasks they love and find value in. And stay involved they do! We know these names because they are on the forefront of dementia rights advocacy, they are authors, and they are in the news. Richard recently passed away this year, and Christine will be coming out with her fourth book, and Kate will be coming out with her first book.

The first book I read after diagnosis of dementia, was Christine Bryden's, Dancing With Dementia. In, Dancing With Dementia, Christine eloquently writes what it is like to experience dementia first hand (I nodded the whole time I was reading it going, "yes, yes, yes!". She also details how she and a number of other people with dementia and Alzheimer's came together to work to get the two main Alzheimer's Associations to even allow people with dementia or Alzheimer's to attend their conferences on dementia and Alzheimer's. You would think this was written in the 80's, but sadly, it was as late as 2006, when we were allowed to be included. This was the birth of formal dementia rights advocacy.

Christine Bryden and the other's formed DASNI, Dementia Advocacy and Support Network International, and she continues to travel the world giving talks and educating people that just because you may happen to be diagnosed with dementia, we are still people first and still able to have useful, productive lives.

Kate Swaffer, joined the scene and works for DAI, Dementia Alliance International, which was founded by many people with dementia and Alzheimer's to carry on advocating for rights for people with dementia and Alzheimer's. She writes a great blog, that many quote and link in a number of places. DAI runs weekly online video support groups for people with dementia; they offer monthly online video Meeting of the Minds, with notable guest speakers, that anyone can attend; they offer monthly online member's meetings where you can follow what they are doing; and most importantly, they offer you the chance to get involved in advocacy for our rights. They are the only organization that is run exclusively by people with dementia/Alzheimer's for people with dementia/Alzheimer's, although also include non-diagnosed advocates.

When I was first diagnosed, there were many things to learn and come to grips with. First there was the issue of the disease being terminal. Then there was the issue of small-scale stigma with some doctors, medical care providers, and a few others who knew. But what really threw me for a loop, and to this day I have trouble grappling with, is that pretty much everything that is out there on how to care for us, is inaccurate and often way out of tune with anything people with the disease are experiencing. These sources often suggest taking tasks away, sitting us in a corner, maybe giving us a few pictures to look at, maybe playing some music, but otherwise to consider us already gone. Well, they are written and created by people who do not have the disease, so what could they know? I wanted to stand up and say, "hey, wait, I am still here - I am still human -and I am living a pretty descent life!" Because clearly, no one knew this. This is how I came to meet Kate, and learn from her.

This is what I leaned from Christine:

Christine Bryden credits her advocacy work, and working on her books, for her retained ability to still do amazingly well that is nothing short of astounding. She often shares pictures of her MRI's, to which her neurologist is amazed that she is still walking and talking.

This is what I learned from Kate:

Kate Swaffer also credits her advocacy work for her retained ability to still do amazingly well. She writes about it, and is quick to tell you whenever the subject comes up, that she believes her work has actually improved her ability to function. She even went to college.

What I would add, is that the improvements that are noticeable in them are far better than the improvements one may get from Aricept. And better than improvements seen from just socialization. So amazing are they, that I am astounded.

Whatever they are doing, give me some of that!

Even from the short time I have been involved, I too am noticing improvements. However, I think they can be explained away with neuroplasticy. Neuroplasticy is the formation of NEW neural networks and connections that were not previously in the brain. Like when there is a demand on the muscles, we will form new muscles. So too, when there is a demand for function, the brain will create new pathways to function.

Why I think advocacy works so well to trigger this, is because the need is still so great and the gap in support, services, and care for people with Young Onset so large that it is still largely missing-in-action. Because we have these diagnoses, and because we face the stigma and lack of services every day, changing this becomes a necessity, as the quality of our lives are at stake. I personally think that the increased need one feels, i.e. when needs to rise to the level as "necessary for life," for the body's own neuroplasticy to kick in.

In any event, it is clearly working...and it is working better than any other method or means out there.

So, IMO, this clearly needs to be added to the infamous, Best Practices list.

Mimi S.
Posted: Thursday, October 22, 2015 3:36 PM
Joined: 11/29/2011
Posts: 7029

Hi Sun,

Could you please explain more what needs to be added to the Best Practices.

As far as I am aware what you are describing would be listed under working on cognitive activities. For example, the Luminosity program is most likely good for cognition.. However, since I also spend a great deal of my time researching and writing, I think I get lots of brain stretching exercise doing that.

Posted: Thursday, October 22, 2015 7:12 PM
Joined: 7/24/2015
Posts: 3020

Hi Mimi,

I can try, as this is something I am still trying to sort out for myself.

I am not talking about cognitive exercises, although they are certainly good too.

I am talking about something that people like Kate Swaffer, Christine Bryden, and a number of others are doing, that are yielding very intriguing and hard to ignore results...that I suspect are triggering neuroplasticity in a way that Luminosity et al are not.

I am not exactly sure a way to translate what the precise recipe is, at least not in a way that fits readily into language that is ________ enough for a greater audience (yet).

But in my broken, awkward, all wrong language way (that I had hoped to spare you) is the cumulating of the following:

As you know, they all work doing dementia rights advocacy (not that that is the recipe, per se)...and in dementia rights advocacy there are just so many things that are critically needed to be achieved, and it is just so vitally important to them personally, as people diagnosed, to achieve these things...and so few people working on it. Add to that, the people working on it are doing so with the additional issue of being diagnosed and having to overcome their symptoms to do so. *Something* about kicking in *something* (that I am going to call neuroplasticity) that is keeping them functioning, much better, and much longer than would normally be expected in the disease process.

Now, they did not set out to do that (extend the disease process), that is just the result that has been happening and been being commented about from each of the people that are involved in this.

Like in the case of Christine Bryden, who has written extensively about it, and who is public with her MRI scans at her wit pretty much every doctor who sees them comments that, with scans like that, she should not be walking or talking...and yet, here she is still traveling about the world, walking, talking, and giving lectures. Clearly, there is *something* in what she is doing...that is yielding this result. We have MRI scans, and we have person functioning...defying previously held thoughts and opinions about the disease process.

Now, it could just be...I mean, it is possible, that what these people are doing is just our normal potential...and that the potential, through misinformation, has been so greatly reduced in people as to make what they are doing seem remarkable...but maybe isn't remarkable at all. Or, maybe, they found the key to unlock neuroplasticity...hard to say.

But it is a subject that I am very curious about. And because the results in my own life (the skills I have found ways to preserve, and even sometimes improve upon that we have talked about here before), seem to be a lesser version of what they have done...what they have done certainly has my attention.

And, like TED talks...seems to me like an idea worth sharing.

Hope that helped.

Posted: Thursday, October 17, 2019 2:55 PM
Joined: 11/16/2018
Posts: 69

I know this is a really old post, but I just wanted to say thanks for the information. I, too, have been noticing neuroplastic changes in my mother with ALZ. For my mother, anything deeply felt emotion, repeated enough times, becomes a new memory. However, what she's remembering isn't pleasant and I believe these are being triggered by fear of my father, her primary caretaker, who she often doesn't recognize (and who wouldn't be afraid of a stranger in their house?). 

I've been caring for her alone all this week while my father is away getting much needed rest, and at the beginning of the week, she would speak about my father in frustration, but towards the end of this week, this language has become more neutral. I'm curious whether time away from my father is erasing the bad memories of "the stranger". I'm pumping as much positive info and activity into her as I can this week, and I'm curious to see how she reacts to my father when he returns. Anyway, this whole notion of neuroplasticity has really sparked my interest, and if I can use it to mold my mother's brain back into a brain that loves, or at least trusts, my father, then I will be over the freaking moon (and so will my family). 

Posted: Monday, October 28, 2019 4:05 PM
Joined: 3/25/2015
Posts: 684

Little Volcano, Don't trust all that you read from that poster. It was discovered that she faked her dementia and faked her own death!

There are a couple of videos of her on the internet; in one she poses as a dementia patient which she is not - and talks with a tv reporter about "early exit" (committing suicide). In another, she is with her daughter and granddaughter/ Sun reported her granddaughter has autism although since she lied about her own "illness," who knows if that is true - and they talk about horse therapy for autism. 

Her name and her posts bring up bad memories! I would post her name so you could look her up, however, that would get this post removed pronto. (It happened when others posted her name.)