It is estimated that over 10 million people in the US are living with cognitive impairment but have never been diagnosed. Unfortunately, this means that millions of people who are at risk of developing serious cognitive decline and dementia are not receiving the care and guidance they need to help them minimize their future risks and improve their brain health. This is an immense tragedy.
Why are so many people undiagnosed? There are multiple factors, but fear and stigma are two major factors that often lead individuals and their families to avoid diagnosis until it’s too late.
Fear
When experiencing cognitive challenges such as forgetfulness, many people are so terrified of dementia and Alzheimer’s disease that they prefer to simply “not know” what is wrong. They believe it’s better to live a life that still has hope than one that’s weighed down by a terminal diagnosis. That’s understandable, and most of us can empathize. However, by avoiding diagnosis they are losing out on treatment and actions that may prevent and delay further decline. Unfortunately, for many their fear of Alzheimer’s is actually driving them toward Alzheimer’s.
Stigma
There is an unfair stigma surrounding cognitive impairment that drives many people away from being diagnosed. There is a misperception that once you have a diagnosis of cognitive impairment or dementia, you’ll become “less than” other people and will become “fully dependent”. This is driven by many factors, including the media portrayal of people with Alzheimer’s and a lack of empathetic understanding within some societal groups. In reality, there are LOTS of people who live for many, many years with cognitive impairment or dementia while maintaining a high quality of life with independence and meaning. Their lives don’t end… they change. And many positive lifestyle changes have also been shown to slow the progression of cognitive impairment, meaning that many people can improve and lengthen their lives after a diagnosis. The Dementia Action Alliance (daanow.org) provides wonderful resources and support focused on the concept of “living well with dementia”.
Why?
But why are fear and stigma considered a tragedy around cognitive impairment and dementia? In many ways cognitive impairment is similar to the physical disabilities many of us have… the brain is simply a body part than can have problems like any other. But because a cognitive impairment affects our mind, some people erroneously think of it as a “personal flaw” that must be hidden away. In the past, this has been true in mental health in general, BUT that’s changed dramatically. People who we now describe as “anxious”, “depressed”, “borderline”, “bipolar”, etc. were described as “weak”, “lazy”, or “crazy” through much of the 20th century. People who were once discarded are now treated, respected, and understood… and they are contributing positively to society and in the workforce.
What We Can Do
To avoid such tragedy, we should start shifting our thinking about cognitive impairment and dementia in a similar way, driving away fear and stigma for good. If we think of these as simple mental disabilities that don’t define who a person is AND that we can accommodate, people will likely be much more open to getting a diagnosis. And a proper diagnosis is the first step to slowing/stopping further decline while living a better life!