I’m not after a cure for dementia

/ January 8, 2022
Healthy fruit & veges vs drugs?

It is a new year, so I am wishing you all a very happy, healthy and productive 2022. Oddly, I still feel like we just celebrated the New Millenium New Year…

Anyway, I have not been active on my own website, for a host of reasons of which most are best left unsaid, but I thought I’d kick off 2022 with a blog about whether I’m even hopeful of, or want a cure for dementia.

My interest in this topic was renewed earlier this week, when I was phoned by a CEO in the USA, wanting me to publicly endorse the release of the new drug, aducanumab, and to help him to find other people with dementia who’d do the same.

Of course, the release of this new drug has given some people with dementia hope; but it has enraged others, and it has caused a divisiveness amongst some dementia self advocates, not dissimilar to the divisineness over the covid vaccination.

Many scientists say there is not enough evidence that Biogen’s aducanumab is an effective therapy for the disease. A number of FDA scientists agreed, and stepped down from the FDA after the release of this drug. I agree with them, and this new drug has not given me any hope, but rather, it has 1) angered me that it was released, and 2), I feel ‘vaguely abused’ that the dementia advocacy organisations all over the world, have endorsed it.

Alzheimer’s Europe appears not to ensdorse it either, as reported in an article titled, European Medicines Agency rejects marketing authorisation application for aducanumab, which started with “On 17 December 2021, the European Medicines Agency (EMA), in a decision closely watched by the European dementia community, decided not to authorise aducanumab for the treatment of mild cognitive impairment due to Alzheimer’s disease and mild Alzheimer’s dementia”.

As someone diagnosed with a rare young onset dementia, you’d be excused for thinking I’d want a cure.

Kate Swaffer 2022

I do, of course, but not with drugs approved (pushed onto us) via Accelerated Trials. I feel a bit the same about the covid vaccinations, and am eternally grateful I am not a younger woman, still hopeful of having children, as it appears the risk of the new covid vaccines affectiving fertility is high. I am already hearing from younger female family and friends who’s menstrual cycles have already been affected.

So, back to a cure for dementia, and why it is not high on my list of priorities. In fact, I find the strapline, ‘A world without dementia’ offensive, and believe it increases the stigma, or at least keeps stigma alive.

Ask yourself if we have a cure for any of the following:

  • Cancer
  • Multiple Sclerosis
  • Motor neurone disease
  • Diabetes
  • Heart disease
  • Parkinsons disease
  • Etc…

We do have disease modifying drugs for many of these conditions, and we even hear many people with cancer go into full remission. But a cure? Mostly, the answer to that is ‘there is no cure’ – at least, not via western medicine and pharmaceuticals.

For me, there were no new year resolutions; instead my hope and personal priority is to keep my focus on brain and total body health strategies, and to continue to keep up with the work of Dr Dale Bredesen, and the many others including many who were once sceptics such as Dr Jason Karlawish, now following Dale’s lead.

Taking prescribed drugs of any kind, usually leads to side effects, which then means you need more drugs to allay the side effects of the initial drug, and so on, and which we know then leads to high rates of polyphamacy in many older people. Many refer to Dale as a quack, or someone peddling false hope and an expensive protocol. When his first article on reversing dementia came out in 2014, it was the first real HOPE I had ever had since my own diagnosis. Ps. The $60,000 USD per patient per year for the new ‘drug’ is more expensive than following the Bredesen protocol, and potentially with many unpleasant side effects?

Choosing a healthier lifestyle, improving our diet, and increasing our regular exercise has no negative side effects.

And, science has proven this approach to living significantly reduces the risk of many chronic conditions such as heart disease and cancer, and now, also dementia. Earlier diagnosis of dementia, followed by rehabilitation (e.g. as provided after a stroke), and improving our lifestyle, is being shown to reverse MCI and early dementia.

And if it doesn’t do that, it will improve our mental health, and our overall well being. It seems there are many ‘dementia experts’ out there who appear to think that’s a problem?

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20 thoughts on “I’m not after a cure for dementia”

  1. I am with you, Kate.

    I was a former carer to my parents-in-law with dementia. choosing a healthier lifestyle (improving diet, regular exercise has no negative side effects) and improves the quality of life for both the person with dementia and the carer.

    Many policymakers and leaders of dementia advocacy associations lack a real understanding of dementia, the support individuals living with dementia, their carers and families truly need.

    On top of the huge sums going into discovering a cure for over decades, we are still nowhere near an effective ‘cure’, in science, in medicine, in rehabilitation and in resources for care and support. The annual global economic cost of dementia continues to escalate with inflation and is expected to rise to USD 2.8 trillion by 2030 based on forecasted increases in the number of cases of dementia and the cost of care.

    By 2050, the calculated cost will conservatively reach USD 48 trillion. These costs do not include the costs of unpaid informal care and the health of informal carers which is substantial,  particularly among women and young carers. In reality, it would be at least 2 to 3 times more.

    While dementia is a major cause of disability and dependency, there are only 43 national dementia plans globally. 37 are in the WHO Member States, only 12 plans considering the needs of women and none for young carers.

    Yet, there are 194 WHO member states, 105 ADI associations, hundreds and thousands of dementia-related associations and ageing-related organisations across the world …

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    • Thank you dear friend… let’s hope current and future national dmentia plans, and health care professionals, researhers and service providers all start to embed dementia as a major cause of disability, and apply the CRPD to all of their policies and programs.

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    • Dear Jacqueline, thank yo for your considered and thoughtful response. I agree with everything yo say, and it is truly shameful that this bit is true:

      “Many policymakers and leaders of dementia advocacy associations lack a real understanding of dementia, the support individuals living with dementia, their carers and families truly need.”

      If the people making all of the decision do not have a real understandign of dementia, perhaps it is time they moved aside and and people who do.

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    • Dear Kate, I think … People don’t know what they don’t know but think they know (?)

      When:
      – 62% of healthcare practitioners still believe that dementia is part of normal ageing; and
      – 2 out of 3 people are having little or no understanding of dementia in their countries.
      (the ‘Attitudes to Dementia’ survey of over 70,000 respondents https://www.alzint.org/resource/world-alzheimer-report-2019/).

      We need a cure for STIGMA and DISCRIMINATION. Public awareness and education must remain a top priority and not only during World Dementia Month in September.

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  5. Thank you Kate for your honesty. We are born. We live. We die. That is being human. It is what we are. Living a healthy lifestyle, as an integral part of one’s autonomy, a selfhood that does not succumb too soon, or too easily, to “micro-management” – whether by an industry dispersing pills, or by the one already judged so poorly, by a Royal Commission.

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  6. Yo go Kate! Tell it like it is! I also agree and am angered by the FDA process that failed miserably in approval of this drug, and succumbed to the pressure & money offered to approve this drug without the outcomes critical for approval! Praise to the scientists that left their jobs in protest! I am disgusted and sorry you had to deal with that corrupt CEO! I hope his/her name is revealed! Someone has to stop these people that are so motivated by greed
    Trying to get you, and others dealing with dementia, to back an unproven Alz drug that used false data and pressure on the FDA to approve their drug so they could make billions off the patients, desperate for help and health care systems paying the outrageous cost of their drug!
    I saw this week Biogen has cut the cost in half over the outrage and bad publicity, trying to do damage control! Then they have the balls to call you to ask for your help to pedal their unproven drug, & recruit others with dementia to endorse this drug that may cause horrendous side effects! There is no end to their unethical & criminal behavior! They have proven with their actions the DONT care about patient outcomes, and will take advantage of patients in desperation! Sorry for the rant, but I am & have been outraged by this approval!
    KUDOS TO YOU FOR STANDING UP FOR WHATS RIGHT!! You are AMAZING! Love & Hugs, Judy

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