Feral. A menace to themselves and others. Troublemakers. Mad, bad, and dangerous to know. That’s how Christopher Jay described people with dementia in a recent article in the Australian Financial Review.
The purpose of the article was to highlight the Australian Government’s call for tenders for the creation of Severe Behaviour Response Teams. According to Jay, these teams will be “a mobile workforce of clinical experts available to provide timely and expert advice to Commonwealth-funded approved residential aged care providers that request assistance to address the needs of people with very severe and extreme behavioural and psychological symptoms of dementia (BPSD). SBRTs will assess the causes of the behaviours, assist care staff until the immediate crisis is resolved, develop a care plan to address and deal with behaviours, then provide follow-up assistance as needed. This may include the training and upskilling of staff to enable them to appropriately manage residents with extreme behaviours.”
And I’ve got no problem with that. The behavioural and psychological symptoms of dementia are a serious issue and staff in aged care facilities do need better training and support to manage them. My problem is with Jay’s implication that (a) people with dementia are being willfully violent and (b) the solution is to restrain and sedate.
Dementia is the term used to describe a collection of symptoms caused by disorders affecting the brain. Disorders like Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, and Creutzfeldt-Jacob disease. Consequently, a person with dementia has no more control over the behavioural and psychological symptoms of their condition than a person with epilepsy has over their seizures. Restraints and sedation are inhumane. They also increase morbidity and mortality, and do nothing to address the underlying cause of BPSD. But here’s the kicker: while a certain level of behavioural and psychological disturbance is a normal part of dementia, the most extreme behaviours are caused by other people’s inability to meet the needs of a person with dementia when, as a result of a degenerative brain disorder, they have lost the capacity to express those needs. Most extreme behaviours are the result of social isolation, a lack of meaningful activity, overstimulation, and undiagnosed or untreated pain and infection. A failure to understand this, and respond appropriately, is the real reason that staff, families, or other residents in aged care find themselves on the receiving end of physical violence, verbal aggression, or resistance. It’s also, apparently, the reason that journalists write inflammatory articles in major newspapers.
I wasn’t the only one who was horrified by Jay’s ignorance. The dementia community were vocal in their disgust, but letters and tweets to the Financial Review have gone unanswered. The Australian Press Council told those who lodged complaints that they saw nothing worth investigating. And when I offered to write a response for The Conversation, I was told that calling people with dementia feral wasn’t “a strong enough hook”. I couldn’t help but wonder if the response would have been different if Jay had described Indigenous Australians as feral. Or gay men. Or people with a disability. Or people with mental illness.
I once went to a costume party dressed as Demi Moore’s character from the movie GI Jane. The movie is about the first woman to complete Navy SEAL training and there’s a great scene where an African American soldier tells Moore’s character that the discrimination she’s facing now is the same discrimination his people faced 50 years ago. He says “You’re just the new nigger on the block, that’s all”. And so it is with dementia.
People fear what they don’t understand and a huge amount of work has gone into helping people understand homosexuality, disability, mental illness, and Indigenous culture, and helping our society move away from language, legislation, and funding models that view institutionalisation, criminalisation, and dehumanisation as the “solution” to these “problems”.
Around the world hundreds of thousands of people have devoted their lives to dementia. Researchers, advocates, health professionals – all working to increase awareness, understanding, and funding, and develop better models of diagnosis, treatment, and care. But a single article in an influential newspaper can undo years of good work. And when The Press Council and The Conversation are complicit, it’s easy to feel defeated. But what we’ve learnt from sexuality, disability, mental illness, and Indigenous advocates is that social change takes time, that it starts at the grass roots, and that we cannot give up. We must keep doing good work, keep agitating for change, and keep educating the likes of Christopher Jay.
People with dementia are not feral. They are not a menace to society. They are not mad, bad, or dangerous to know. They are just people. People who have worked jobs, raised children, loved, and been loved. People who are trying to keep their dignity and humanity as their brain (and the world) rips it away. People who need our support and our understanding. People.