The impact of false hope

Screen Shot 2016-09-04 at 12.05.36 PMFor my continuing series of World Alzheimer’s Month / Dementia Awareness Month 2016 #WAM2016 #DAM2016 blogs, the post today is about the impact of hearing and reading about possible cures, and failed research.

Members of Dementia Alliance International, and the much wider community of people with dementia and our families, are constantly being bombarded with this or that article or media release about an impending “cure or Alzheimer’s”.

Whilst it is good to read and hear about research, there is also a very negative impact of this constant stream of FALSE HOPE.

Considering many of us do not have dementia of the Alzheimer’s type, this is not only discouraging, but I wonder, will someone ever start to research our type of dementia more.

And we all know how much money has been spent on other terminal diseases and illness such as cancer, motor neurone disease and so on, and we also all know there is no cure in sight for them. So, with so much LESS MONEY SPENT ON DEMENTIA RESEARCH, and most of it going to Alzheimer’s Disease, there is little hope for many of us. My blog yesterday said most of this much more succinctly, but I will continue to stay focused on My wish for dementia for a bit longer yet!

False hope…

This article published this last few days, Alzheimer’s researchers seethe over years of missteps after latest drug failure, really highlights our reality.

The fact that many of the “scientists who have toiled for decades to understand the devastating disease expressed frustration and even anger that their field has not made more progress toward a cure.”

I posted the article onto my Facebook page, as per the image above with a comment about why it is necessary to stop giving us all false hope… and focus more on care.

Below are a few of the comments from that Facebook post:

BK – You are so right Kate! Because in the midst of all the turmoil in the research field, here we are, trying to make the best of things. If they think they’re frustrated & angry, exactly how do they think WE feel!

ON – So true Beatrice, well said!

JK – Thank you Kate for reinforcing my refrain. So many issues can be minimized or even resolved with a switch in communication and approaches. Rather than spending all those donations (in the multi millions) on pharmaceutical companies, let’s train caregivers, facility staff, and families.

PE – I have to agree Kate – and Jytte – while research into the root causes and a search for a cure – of which form of the multiple types? – is clearly a typical manifestation of the human urge to know and heal, we fail to recognise the importance of the importance of positive support models and education for the wider community and support partners. While we won’t and, arguably, should not give up on research into cause and cure, it is my humble opinion that we could extend longevity and quality of life for people living with dementia through education of the wider community, partners, family friends, support workers, health professionals.

AB – I want to like this 1,000 times.

The next quote from the article, is about researchers who have been too focused on the long time mindset of most in the research community is telling:

“People got into a certain mindset, had a certain set of expectations, and then proceeded on those expectations for 35 years,” said Dr. Daniel Alkon, a 30-year veteran of the National Institutes of Health and now scientific director of the Blanchette Rockefeller Neurosciences Institute in West Virginia. “It was the expectation that amyloid plaques and tau tangles kill brain synapses and neurons,” and that eliminating them will stop the disease, he said. “There were a lot of clues that wasn’t true, but because of their mindset, people didn’t see those clues.”

Perhaps the people living with dementia and our families, who have been asking for research to improve our care, and research on rehab for dementia, and research for holistic approaches to dementia, must be thinking outside the square, as we have realised that, and have been begging for more research into care and not just the all elusive cure.

Campaigns and slogans asking for “A World without dementia” are off the mark completely! After all, how many cures have we heard of for cancer, and how much money have we spent on that in comparison…

Finally, someone getting real about reporting dementia research…

In another recent Forbes.com article, Getting Real About An Alzheimer’s Cure, by Howard Gleckman for a change, there is a large dose of reality in print. That goodness for this very helpful reality check for the public!!

Howard starts off with: “For decades, people have been hoping for the magic bullet that will prevent, cure, or even slow the progression of Alzheimer’s Disease or other dementias. Yet, despite small hints of progress– and billions of dollars in research–there is no drug, and no app or game, that can successfully treat these diseases.”

The final pints in the article, which you will have to go to to read in full, are this:

  • There are no magic bullets, and likely won’t be any for some time.
  • We are learning from failed clinical trials, but…. Congress is being myopic
  • We must not forget that Alzheimer’s is just one of many forms of dementia.

“Apps and games don’t work. And, so far at least, neither do drugs… There are plenty of scams. But nothing we’ve found so far will slow dementia. Alzheimer’s gets most of the attention and nearly all the money, but vascular dementia or Lewy Body dementia and dozens of others are just as terrible.”

At last, someone who is willing to stop giving us all FALSE HOPE!

Whilst the research community keep so myopically focused on the Holy Grail of dementia research (a cure), and research almost totally focuses on the Alzheimer’s type of dementia, they are in effect doing more harm than good. We need a balance in research on a cure, on better care, and on supporting our families or care partners, as we are all in this together. 

 

11 thoughts on “The impact of false hope

  1. Thank you for sharing this Kate. I work as an independent dementia consultant in The Netherlands and support people at their homes. This is indeed not so obvious yet! Firstly because of the taboo on dementia but also because of lack of financial support from the municipalities. I also try to ‘educate’ people in my area about dementia, the symptoms, the effects in behavior and how to live with it day by day as well as possible. I will use your information in my new newsletter and write again about the need for more structural support in the homes for people with dementia and their caregivers.

  2. …Dearest Kate…..I wish someone would do research into what I am having success with, I am not the only one this drug is working for….AND…. its patent has expired, so anyone can research it….CSIRO maybe ??

    • Hi Tony, I agree! It would be good, and it is something I have wished/asked for regarding my approach to living with dementia, but no one seems interested in the FACT we can and many of us do live much better than predicted. At least Professor Dale Bredesen is working on it… to me, such a relief. You should talk to CRISO though, about your treatment, they might be interested. x

  3. PE, Extend longevity? I’m fairly certain that is not on anyone’s agenda who actually has dementia or is a supporting family member. Improving quality, yes, but longevity is certainly not a focus / goal of anyone I’ve ever met dealing with dementia.

    • No idea what PE stands for? Thanks for your comments. I think if more people with dementia were supported to live well, not only die from dementia, many more would want to live longer with it. It is only near the end we probably all would want to speed up death… just another way to think about it.

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