Anonymous testing for Alzheimer’s to remove stigma

This proposal is about anonymous testing for early detection of Alzheimer’s disease.

This will allow to remove stigma and fears and empower oneself with a diagnosis to implement the right life style changes for brain health.

Comments
  • Antonella Idea Creator 8 months ago

    Anonymous testing for early detection of Alzheimer’s

  • Björn Arvidsson Challenge Creator 8 months ago

    Yes! Can it be further developed to provide support of how the person can go further - or learn more? How will the person find this testing? Especially if they are in denial? There a lot of good things to build this upon.

  • Åsa Sandin 8 months ago

    Maybe start a phone line where patient / relative can call if they are worried about having an early dementia. This must come along with an extensive information campaign with both information about dementia and about the phone-line. This call can be a first step where patient/relative can be anonymous.

  • Antonella Idea Creator 8 months ago

    When we offered HIV anonynous testing we also had no therapy; nevertheless, we empowered patients with knowledge and created a critical mass which forced the society to find successfull therapeutic solution. How to make it happen,? We can use the HIV model. Currently we have a diagnostic tool measuring with high accuracy amyloid pathology in the cerebral spinal fluid. The results correlate with amyloid PET and can also identify patient with cognitive decline who will progress toward amyloid pathology! A good start to make an anonymous early screening and face the future well prepared.

  • Anna Pedersen 8 months ago

    Anonomus testing and a phone line where patient / relative can call if they are worried about having an early dementia. - This is a very good idea!

  • Antonella Idea Creator 8 months ago

    Yes, anonymous testing should be combined with consequent medical support and counseling. Of course a media campaign should be run to raise awareness about this opportunity and the post-diagnosis support. The use of digital Biomarkers can be also useful for early detection. In fact, It is not about which methods we use to detect the pathology, rather the way people feel about the fears and the stigma related to be diagnosed. These are the deterrent to early diagnosis toghether with the lack of an available therapy. This is why it essential to garantee anonymous test.

  • maria teresa 8 months ago

    I like this idea because it is much more likely that somebody worried about their mental health would get tested in an anonymous, ideally digital way, rather than face the issue with family and doctors. The follow-up should then help them seeking proper support and help, if needed, to change their lifestyle accordingly, and, crucially, get involved in clinical studies. We need to create a critical mass. Once the mass is there, it will be clear that it is not something shameful, and people will start talking about it openly.

  • Jonas Edström 7 months ago

    I think its a really great idea, if at the same time work would be performed to reduce stigma.

  • Antonella Idea Creator 7 months ago

    The stigma will be reduced by creating a critical mass of diagnosed subjects and this will occur over time. First we must remove fears and shame. This will be achieved by anonymous status.

  • Annika Remaeus 7 months ago

    An anonymous test can also be recommended by friends and family if they see symptoms/have questions and want “external” support. Helpful and an easy first step to start a process. Features like sending an link to the test or supporting testing together could be helpful features.

  • Antonella Idea Creator 7 months ago

    Once the results are available the subject will be offered with medical advice on how to slow cognitive decline based on current scientific knowledge

Build-ons from this idea

  • Self test

    A self-test, can be digital. In the future maybe a self-test for biomarkers.
    People with dementia know and are worried, but do not want to accept the disease and book time

    4







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