What is dementia advocacy?

Dementia advocacy is not very unlike playing the devil’s advocate. Not that people with dementia are the devil, but they certainly are demonized and stigmatized both in the media and in popular culture. Due to the nature of the conditions that compose the spectrum of what we call dementia, they are either not able to defend themselves, or not taken seriously when they do. That’s the reason that many people have taken up their cause and become the mouthpiece for dementia; the voice of the voiceless, so to speak. More often than not, dementia advocates are caregivers with loved ones who have been diagnosed with mental illness. All they want is for their relatives to be treated with dignity and respect, two basic human rights that dementia does not strip one of. As John Merrick said, “I am a human being! I ... am ... a ... man!”

In other instances, dementia advocates take a stand on behalf of the mental illness community as a whole. A very recent example of that is the Isla Vista killing spree which has been chalked up to mental disorders -the perpetrator was diagnosed with Asperger’s syndrome and was called by his mother a high functioning autistic child- and to either the incompetence or unwillingness of the mental healthcare system in California in particular and the United States in general. Dementia advocates have responded to this type of affirmation by basically calling it a generalization that stigmatizes all people with dementia; the kind of stigma that keeps many of them from seeking help.

Outlets such as the Autism Daily Newscast published an article on May 27 stating that the killer’s Asperger’s had nothing to do with his rampage. Furthermore, others have put the blame of the senseless tragedy on the killer’s blatant misogyny, claiming that that hatred of women was a trait that he acquired during his upbringing as opposed to a mental illness that one is born with. Many other people agree on occurrences like that being a product of poor gun control rather than an issue of mental health.

Regardless of the above examples, it would be mistaken to believe that all people with dementia are helpless and desperately need someone to do their talking. That is actually quite far from the truth, especially when they find strength in numbers. For instance, at least one third of the International Dementia Advocacy and Support Network’s membership is comprised of people who have dementia themselves. A case of the inmates taking over the asylum? On the contrary, I would actually liken it to 1990’s film Awakenings, in which a group of catatonic patients awaken from their state and embrace life to the fullest for as long as they can. So can people with dementia overcome their limitations, many of which -though by no means all- are perceived or imposed by others, and live the life they deserve with the help of dementia advocacy.