I’m forever hopeful of positive change… For so many things related to a dementia diagnosis, dementia care, disability support, respecful language, and ageing in general, as well as the many rights violations people with dementia continue to experience.

This includes disbanding the harmful labels currently still being used to descibe people with dementia, or our ‘symptoms’ such as BPSD. Many others also agree with me that we need to ban the paradigm known as BPSD.

Language and labels are an important topic, and incredibly relevant to many areas of dementia and dementia care. Living or diagnosed with dementia are always more respectful terms than sufferer of, or suffering from dementia. People with dementia are not a burden; it may be stressful as the care partner or family member supporting someone with dementia, but being labelled a burden is not only disrespectful, it is harmful. Below is a recording of a presentaiton I did on language many years ago; sadly, many researchers, health care professionals, and dementia charities choose to ignore us…

• Sufferer/suffering X
• Demented X
• Burden X

And then we move onto the so call dementia-friendly initiatives. If you’ve followed me here for a while, you’ll know I believe they are not friendly at all, and are causing harm, perhaps unintentionally (?), and how they are inceasing stigma and negative attitudes about us. They are also a form of benevolent othering; distinguishing people with dementia as an exceptional group to elicit public sympathies, promotes benevolent othering, and unwittingly (or knowingly?) refers to them negatively, and as ‘other’.

• Dementia Friendly Initatives (DFIs) X

Exclusion vs Inclusion … to be included also means to employ people with dementia. Not to employ people with dementia in the very campaigns developed and run by people withOUT dementia, and who all loudly proclaim will ‘improve their lives’ is discriminatory and paternalistic, and a form of benevolent othering. It is also a form of is a form of economic stigma.

Despite this, the 2024 ADI World Alzheimer’s Report confirmed stigma and attitudes towards people with dementia have worsened since 2019, not improved, providing strong evidence these campaigns are causing harm.

Seriously!!!!!

Yes, the real challenge here is that everyone has simply moved on to the next conference, report or trip for their advocacy. It appears, everyone om this space is refusing to address that continuing to ‘do the same’ is NOT WORKING…

I’ll share a longer blog about the DFIs in my next blog, but here is the link to a recent podcast where I share my thoughts on this topic, and a link to an article on HelloCare, titled Unmasking the facade of “Dementia-Friendly” initiatives, based on the podcast.

The DFIs are a global initiative but they are not friendly, and instead are stigmatizing, discriminatory and exclusive, and not inclusive beyond the tickbox approach to inclusion needed to receive funding.

Some days, it is hard to remain

HOPEFUL…