Dementia and human rights

Screen-Shot-2016-01-14-at-11.57.45-am-1024x172On the 17th of March 2015 at World Health Organisation’s First Ministerial Conference on Dementia in Geneva, and as Chair of DAI, I placed the Human Rights and DisAbility Rights of people with dementia onto the world stage.

Last week in Budapest, at the Alzheimer’s Disease International (ADI) Council meeting held prior to their conference, for the second time we made Human Rights for people with dementia history for people with dementia, when all Alzheimer’s organisations around the world agreed to a position paper that was initiated by DAI, and released jointly by ADI and DAI. Read the position paper on the Human Rights for people with dementia here.

There is a lot on the horizon in this space, which will ultimately ensure many more people with dementia are #LivingBeyondDementia, to only dying from it. The May blog will be about the progress of the work of Dr Dale Bredesen, which is all about the reversal of cognitive decline. I am really really really (fingers and toes crossed!!!) hoping he will be a speaker for the first DAI conference in Kyoto next year, when we host it alongside the ADI conference.


7 thoughts on “Dementia and human rights

  1. On the article discussing “Liberty and security of the person”, what is the DAI or ADI stand on detention of those considered a danger to self or others? Does it involve more pressure for release whenever that is judged safe, or what is the issue?

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    1. I have no idea of the position of ADI, or even DAI on this… my personal opinion is that if it is dangerous, then in the same way someone with mental illness is ‘sanctioned for their or others safely’, it is ok, but currently, people are simply LOCKED up for their own good, with no regard to human rights, even people in aged care without dementia. There is nothing currently that considers our human rights in this space, and it is a huge issue soon to become very global. Also, if the care was improved, most of the ‘challenging behaviours’ would go away, IMHO. I see this in Group Homes Australia, as clients that are referred to them who have previously been managed as having them, display almost none due to the improved care.

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      1. A friend’s mother, recently diagnosed rather generally with dementia, mild-moderate, was taken to ER yesterday with marked tremors, along with UTI and extreme agitation. She was yanking needles and catheters out, and combative, but staff chose to not restrain her, saying it would take 30 minutes of paperwork. That is good they think hard not to, but likewise she needed restraint for safety of all, so was that practical? Eventually, they had permission to give her a shot of Haldol, a chemical restraint – but a restraint, nonetheless. A tranquilizer is less torturous than being strapped down, but I worry about dangerous side effects. This lady has occasional hallucinations – not sure if was mentioned to her neurologist during diagnosis. I don’t think the possibility of dementia with Lewy Bodies (DLB) has been discussed, and I hear antipsychotics need be used very cautiously with DLB, with Haldol shots the most worrisome. Liberty, security, safety, restraint, and drugging are such complex but important issues!

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      2. I wanted to add this quote and link to follow my May 2nd comment, telling of the possible dangers of indiscriminate prescriptions to those with Lewy Body Dementia : “Severe neuroleptic sensitivity affects up to 50% of the LBD patients who are treated with traditional antipsychotic medications, and is characterized by worsening cognition, sedation, increased or possibly irreversible acute onset parkinsonism, or symptoms resembling neuroleptic malignant syndrome, which can be fatal.” https://www.lbda.org/go/er

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