Dementia in a Society Scared of Aging

A few times a week, my dad will text me a link to a news article relating to dementia. Recently received headlines include "Well-Known Buffer Against Cognitive Decline Has Zero Effect, Study Finds", “We Still Don’t Know Which Factors Most Affect Cognitive Decline as We Age”, and “The Promise of a New Alzheimer’s Drug” (the latter is from the New Yorker, by Sue Halpern, a must-read). My dad is quick to send me anything he knows I’ll read, but when it comes to the subject of dementia, there hasn’t been a shortage in the headlines. Given the rapidly increasing rate of Alzheimer’s and other related dementias (ADRD) diagnoses, as well as the digitization of medical news, the increase in online discussion on dementia can be expected. Online conversation is even further stimulated by high-profile cases ("How Bruce Willis' Diagnosis of Frontotemporal Dementia Differs from Alzheimer's Disease"). However, there is another overlooked factor underscoring the rise of articles on the subject.  

In a society obsessed with youth, or rather, an anti-aging society, the threat of age-related cognitive decline is terrifying; a dreaded symptom of the passage of time. Common examples of other symptoms can be found in the sea of products, services, and advice that seems to surround us: anti-wrinkle cream, articles on the foods to eat to increase health and longevity, exercises to prevent sagging skin, books on exciting things to do before retirement, and so on. This commercialization of youth has cheapened its value, but more importantly, it inflates the value of an impossible avoidance of aging as well as a distorted view of ourselves. Learning to identify ourselves with certain behaviors or external markers of youth allows for deep unhappiness when we inevitably lose those qualities. A professional skier is at a loss after they can no longer tolerate the burden on their knees. An avid reader is frustrated by the newly insufficient prescription of their glasses. An ambitious businesswoman is secretly anxious at her retirement party. Someone’s heart drops upon finding their first gray hair. The fear of these external (often physical) losses due to age is understandable; the perceived weakening of the outer shell intimidates the soft and vulnerable creature on the inside.  

But what happens if that internal being starts to age faster than the shell?  

This is what makes the fear of dementia unique in a society generally scared (typically completely avoidant) of aging. Unlike wrinkles or the stress of retirement, dementia is entirely unpredictable. Furthermore, a diagnosis is the shattering of any guarantee of reality or one’s own identity. Imagine a curved surface, such as a mirror. On the concave side is the individual with dementia, who begins to experience an unrecognizable world that is increasingly foreign, distant, and full of fear. On the other side of the curve, the convex side, are the surrounding family, friends, and caregivers, who experience an unrecognizable person, foreign and distant from who they once were. The deprivation of familiar reality, shared experiences and identity, and the loss of meaningful relationships that form the basis of the fear of dementia, is the same on both sides. However, as suffering requires consciousness (an awareness often degraded by dementia), the individual who cannot remember that they don’t remember passes the burden of this to those around them. It is this observation of a death before death – the slow and unconscious loss of the inner – that distinguishes dementia from any other external loss or physical condition that age may bring.                                 

This is why the predicted number of 13 million Americans with dementia by 2050 scares us more than other statistics. This is why the chase to a cure, and protection in the meantime, are worth so much – millions are waiting on it. Fortunately, fear of dementia has not paralyzed those already knees deep, whether personally or professionally. There are roughly 11 million family caregivers for those with dementia in the US, there’s an expected (and much needed) tripling of geriatricians specialized in dementia by 2050, and in 2022, dementia research was granted a nearly $300 million funding increase. Ultimately, despite the difficulties, and whether by choice or not, millions of Americans show up every day for this crucial fight. But what about everyone else? Those who are on the outside, fearfully looking in, avoiding the overwhelming amount of information online or even dementia in real life too? Even though 70% of Americans report wanting to know as soon as possible if they have dementia, only 40% say they would tell their doctor about experiencing the first changes in cognitive ability. Unfortunately, the path of avoidance does not lead to immunity against dementia. The reality is that despite differing opinions on the largest protective factors, all research on dementia agrees on the benefits of addressing cognitive aging as soon as possible.  

By acknowledging the reality that dementia will play a role in almost all of our lives, we have a stronger chance of fighting it. The fear of dementia should be used to support oneself and others; destigmatizing discussions on dementia (on aging as a whole!), promoting the education on neurological health in schools and hospitals alike, and striving for a balanced lifestyle without falling into the endless contradictions of suggested diets and activities to prevent dementia likelihood. How many of the articles that my dad has sent me were published for the purpose of preparing people, not just trying to grab their attention? Probably not enough. It’s a self-perpetuating cycle as dementia-fearing and unprepared individuals are unexpectedly handed the caregiving role (or the diagnosis) and the lack of practical discussion and preparation catches up to create the stress and difficulties that caused the silencing-fear in the first place. ADRD diagnoses are paralyzing enough without the society-cultivated shame and fear surrounding them.  

So where to start? I propose “ARE”: Acknowledge, Research, and Enjoy. Acknowledge dementia -- start the difficult conversations on long-term care wishes with loved ones, think about medical surrogacy, and ask your primary physician any questions you might have. Research – take charge on the information you’re exposed to by actively seeking out ADRD-related articles you're interested in reading, avoid the articles that seem to want to jump out at you, and start to explore practical resources that may be helpful in the future. Lastly, the common sentiment of finding ways to enjoy wherever you are in life. A retired skier may become an instructor, or the person who found a gray hair might find an excuse for a fun color of box-dye. Find the things that bring you a happiness greater than the fear of losing it and the cherishment will be unaffected by the passage of time.