Misconceptions and misinformation abound. With someone diagnosed every 3 seconds, it’s more important than ever to know the truth.
It’s not just for old people
When you hear the word “dementia”, what image comes to your mind? If you’re like most people, you probably picture an old person.
It’s true that dementia is most commonly seen in elderly people, but cases have been seen in patients as young as 18 years old. Dementia over the age of 65 is known as “older onset” dementia while “younger onset” dementia occurs in people under age 65.
Since most doctor’s don’t look for dementia in younger patients, getting an accurate diagnosis can be a frustrating, time-consuming process. Once diagnosed, people living with young-onset dementia face unique challenges.
Often, people with young-onset dementia are still of working age at the time of diagnosis. They may have children still at home or may be caring for their own aging parents. Their symptoms may include far more than memory loss and their condition may progress more quickly.
It’s more than memory loss
While memory loss is definitely a key hallmark of Alzheimer’s and some other forms of dementia, memories are not the only things affected.
People with dementia may have trouble finding the right words or understanding what others are saying. They may suddenly find it difficult to complete tasks that they would consider routine, such as loading the dishwasher or getting dressed. Their mood or personality may change dramatically.
Different types of dementia affect different parts of the brain. The symptoms largely depend on which part(s) of the brain are impacted.
It’s not just genetics
There’s a difference between genetic mutations and genetic variants. Certain rare genetic mutations virtually guarantee someone will develop dementia and particular genetic variations increase the chances of developing dementia. But can people who don’t have these genetic risk factors still get dementia? The answer is yes.
For those of us without these rare genetic mutations, research shows that lifestyle plays a huge role in whether or not we develop dementia. Other medical conditions like diabetes, high blood pressure and obesity also sharply increase dementia risk.
Demographics and environment also play a part in determining your dementia risk. Like genetics, however, these risk domains are largely static. In other words, you can’t do much about them.
It’s not “normal aging”
There’s a big difference between normal aging and dementia. As we age, it’s common to experience physical and cognitive changes. The difference between normal aging and dementia often relates to the severity and frequency of these changes.
For example, sometimes forgetting names or appointments may be awkward. But if you remember them later it’s probably nothing to worry about. But if memory loss disrupts daily life, it may be cause for concern.
People of all ages make mistakes and occasional errors when balancing their checking account or following a recipe. But changes in the ability to work with numbers or follow a familiar recipe may be early signs of dementia.
Nobody is perfect and we all occasionally make bad decisions or get stuck in comfortable routines. Sometimes we like to be alone and lots of times we may wander into a room and forget what we were looking for. But when these things become more frequent or severe, it is a good idea to see a doctor to rule out atypical cognitive conditions like dementia.
It’s the AIDS of today
In the 1980’s AIDS was the talk of the town. It wasn’t fully understood, it was deadly and it was untreatable.
People who didn’t have HIV were terrified to get it. People who did have HIV were shunned, stigmatized and sequestered from society. The media portrayed them as “sufferers” and popular culture heaped pity upon them, often absent of human rights and dignity. They were often left to die locked up in hospital wards with others “like them”.
Today, people with dementia often have their human rights and dignity stripped away at the moment of diagnosis. In Canada, Australia and othed so-called developed nations, you lose your drivers license the day you’re diagnosed with dementia — even if you’re not currently having trouble driving. If you’re employed, you may lost your job if you reveal your diagnosis…even though this is illegal.
People with dementia are not afforded basic protections against disrimination. They are locked up in “memory care units” against their will and are held there indefinitely. The use of chemical and physical restraints is rampant and unchecked, even in the United States.
Like cancer in the 1970’s and AIDS in the 1980’s, dementia scares us tremendously. And like those “epidemics” which have since become conditions we can treat and even live well with, dementia won’t remain a mystery forever. In the meantime, we must remember that people are not defined by their disease. People with dementia are still people.