Last week, I had the opportunity to fire off two critical emails. The first was a rather pointed response to an article in the Australian Financial Review. Thanks to my Australian friend Mick Carmody, I was able to see a copy and to help ensure that it would get out to the world.
Quite simply, it is the most irresponsible, ill-informed, and inflammatory bit of writing I have ever seen on the topic of dementia. For a bit of background, the Australia government is considering sending teams of consultants to care homes around the country to aid the staffs in better understanding and caring for people living with dementia whose needs are not readily understood and whose distress may be significant. This is meant to help address the chronic shortage of geriatric specialists and provide more on-site training and support.
In AFR, writer Christopher Jay used this as an opportunity to portray a burgeoning crisis of “Dementia Troublemakers”:
“…one corollary of the inexorable progression of baby boomers into the advanced age groups of the over 70s and over 80s—a surge of feral geriatrics with severe and often violent behaviour problems stemming from dementia.” (My emphasis)
Jay went on to describe those individuals as “a menace to themselves and other retirement home inmates—mad, bad and dangerous to know.” The article is laced with further histrionic thoughts about the increasing dangers that such violent behaviors will pose for society. Jay manages to insult not only people living with dementia, but older people in general and the care homes themselves (“inmates”??).
So I criticized his portrayal of this situation, his framing the response teams as little less than SWAT teams, and his overall ignorance of the benefits of transformational approaches to support and care. Among my comments:
“If anyone from your staff had attended the excellent Alzheimer’s Disease International conference in Perth last April you would have seen an intelligent discourse on the best ways to support people living with changing cognition, and you would have met over 100 attendees living with the diagnosis and speaking eloquently about what they need in order to succeed.
“I have worked with care homes that use little or no antipsychotic medication and help each person to live to best of his or her ability, without exhibiting the apocalyptic behaviour that Mr. Jay fears will become rampant.
“I would suggest that your editors and Mr. Jay educate yourselves about the condition, and I sincerely hope Mr. Jay never has to grow old in a community that views elders the way he does.”
A flood of letters of a similar nature was unleashed on AFR as the article hit social media outlets. Hopefully the editors are “incredibly embarrassed and ashamed,” as one of my colleagues suggested in her email. But there is a larger issue that is too often unaddressed.
Articles like this may represent extreme examples of ignorance and prejudice, but whenever we see them, we should ask ourselves two questions: (1) what are the more subtle forms of stigma and discrimination that permeate our society, and (2) what part do we play in creating such attitudes?
Which leads me to the second email I sent. I recently received a request from the US Dept. of Health & Human Services to recommend someone living with dementia to serve on their Advisory Council for the National Alzheimer’s Plan. Now one might think of that as forward-thinking on their part. But here is the problem, as I see it:
The council is designed to include 6 pairs of individuals representing various “stakeholders” (research, practitioners, family members, etc.), and in addition, one person living with the diagnosis. There are over 5 million Americans living with Alzheimer’s. Can you imagine any other government initiative that would attempt to address the needs of that many citizens with only one representative chosen as an “advisor”?
Living with Alzheimer’s has its challenges, and not all would be able to serve; but is it so hard to imagine that with 5 million people out there, we could find more than one willing and able individual? Why not have seven people with Alzheimer’s and only one each from the supporting groups? And what about the many people who live with diagnoses other than Alzheimer’s?
Assuming that one person can speak for this incredibly diverse population reveals the depth of our stigmas and myths around dementia—that people living with the diagnosis are all alike, and that they are incapable and/or do not have important input to share. Asking for a single representative entrenches these myths and stigmas at the highest level of policy. As I said in my email, it effectively silences those whom we purport to serve.
And the National Plan rolls on as a form of substituted judgment, evidenced by its terribly imbalanced attention to drug research at the expense of education, support, and inclusive community initiatives. HHS should be launching a nationwide campaign to involve many people living with the diagnosis—to give them a platform to share their experiences, and a process by which they can partner with other stakeholders to prioritize needs and direct their own lives.
Make no mistake about it—we have created the Christopher Jays of the world, and we continue to do so every day. As Michael Ignatieff once said, “There are few presumptions in human relations more dangerous than the idea that one knows what another human being needs better than they do themselves.”