Language Matters
By Michael Hodin
It wasn’t long ago that Alzheimer’s disease was hiding in plain sight. Despite skyrocketing prevalence, this devastating, bedeviling disease was virtually ignored. Next to cancer, diabetes, cardiovascular disease, Alzheimer’s was an afterthought. In many parts of the world, it was common for Alzheimer’s to be seen as a normal part of aging.
On World Alzheimer’s Day 2016, we’ve reached a point where Alzheimer’s demands attention. As with HIV/AIDS in the 1980s and 1990s, Alzheimer’s has become the subject of both movie scripts and legislation. It is starting to occupy that intersection of politics and art, where, if history is any lesson, momentum and outrage are fomented.
The medicine and science of Alzheimer’s have also taken important leaps over the past few years, as experts have gained a much deeper understanding of how the disease develops, where treatments might come from, how to manage it as an illness and even some hopes about prevention. Meanwhile, the caregiving industry — where 50% of elder care is Alzheimer’s — has also blossomed, bringing much-needed innovations to how we provide care and support.
There is also the leadership taken by global advocacy. One of the most notable contributions comes from Alzheimer’s Disease International (ADI), the London-based organization has emerged as the global voice for local Alzheimer’s associations. Over the last several years, ADI has fundamentally reshaped how we think about Alzheimer’s disease.
Of ADI’s many contributions, the most revealing is the groundbreaking study in 2010, in which ADI found that Alzheimer’s was consuming $604 billion annually, or roughly 1% of global GDP. This was, at the time, a breakthrough insight that sent shockwaves throughout public and private sectors. Quite rightly, ADI accounted for the heretofore hidden costs of Alzheimer’s caregiving, and they built these costs into their economic analysis. Since this report was released 2010, the economic impact of Alzheimer’s caregiving has transformed from novel to common sense. And with ADI’s latest report, the numbers are even more staggering. Currently, over 46 million people are living with Alzheimer’s or some form of dementia, almost tripling to 131.5 million by 2050. And while the prevalence is exploding, so is the global economic cost — which will reach over $1 trillion over the next three years.
This week, with the release of ADI’s newest report, we may have reached an equally historic turning point, though for much different reasons. ADI’s report, “Improving Healthcare for People Living with Dementia,” begins on a furtively radical premise: that we must make life better for those living with dementia; that we must never forget that a person living with dementia is still a person and not a patient or a data point; that dementia is not a death sentence, but a way of life. And that while there are stages in dementia which threaten our very understanding of the human condition, there are other, more common and longer lasting stages where living with dementia is as real as any manageable illness.
The implications are huge. This notion of “living with dementia” confronts the stigma that overwhelms the disease. Recently, when the actor Gene Wilder passed, the world learned that he suffered from Alzheimer’s only after his death. Pat Summit and Dean Smith, two legendary college basketball coaches, retreated from public life because of their Alzheimer’s. All, way before they had to entertain such retreat! The tragic endings to these miraculous lives offer up a sad comparison to what Michael J Fox, Lance Armstrong, and Christina Applegate have done publicly after their bouts with Parkinson’s and cancer, respectively. Those with Alzheimer’s withdraw; those with cancer lean in.
It is a shame that our society offers such uneven narratives to these different diseases. For even if Gene Wilder had decided to speak out and become the public face of Alzheimer’s, would anyone have listened?
Perhaps — but perhaps not. It would have been an unprecedented public move, and it’s hard to predict our socio-cultural reaction. That’s why this notion of “living with Alzheimer’s” is so profound an idea. The language that we use to describe disease has enormous consequence. It shapes how we think about disease, and it sets the foundation from which other acts may emerge. Acts that include investments in hope, which still often eludes Alzheimer’s.
Consider the language of cancer: you “fight” it; you “battle” it; and, one hopes, you “beat” it. President George H.W. Bush launched a “war” on cancer, and Hollywood has decided it will “stand up” to cancer. Every year, all over America, there are 5K races led by “survivors.”
Where are these terms for Alzheimer’s? There’s no “war” on it, and People magazine has not offered up a slideshow of attractive people who are living with it. Even Mr. Willy Wonka himself retreated. And the adjective to describe someone with dementia — demented — is so offensive it’s unsayable.
So despite the progress, there’s still a long way to go. To that end, ADI offers us a much-needed and truly important reminder that it’s time to start thinking about how people live with Alzheimer’s.
Beyond this first and profoundly important premise, the latest ADI report offers an insightful, pragmatic assessment on what changes need to be made to health systems to make Alzheimer’s healthcare more widely available, more personally satisfying, and more cost-effective. These recommendations are bound to guide conversations for years to come at local, national, and global levels. They are a tactical contribution that global health systems badly need.
But, for once, we should judge a book by its cover. Despite the wealth of important analysis within the report, the title is a radical contribution to Alzheimer’s that, ten years hence, will be referred to as common sense.
Originally published at www.huffingtonpost.com on September 22, 2016.
