What is dementia and why is it so hard to diagnose?

In my “What the hell is going on” posts 1 and 2, I started discussing what dementia is, what it is not, and how to move forward with a diagnosis. Now I want to start sharing a little more. This can get confusing, but stick with me.

I, like many of you, just wanted answers when my dad was diagnosed. And sadly, like most of the country, I really didn’t pay much attention to the details of dementia because it wasn’t in my life.

My dad’s diagnosis changed from doctor to doctor (Alzheimer’s, not Alzheimer’s, stroke-caused, no stroke, and on and on) and I felt lost in the research I was doing. I am a facts person: tell me what I need to know and I will deal.

But dear lord, don’t leave me out in the dark.

Even just the communication between my mom and I kept me believing for years that my dad had young-onset Alzheimer’s disease (a form of dementia) when really my mom had only confirmed young-onset dementia (no confirmed cause). I’m still begging for more information!

I realized I didn’t really know what the hell dementia is, nor did I understand what happens in the brain with dementia. As a result, I decided to enroll in a MOOC (massive open online course) called Understanding Dementia offered for free by the University of Tasmania and to attend an educational symposium put on by local Alzheimer’s Association chapters (I attended the one in Denver, find one near your city through the link above).

This was so incredibly helpful and led to further research on my behalf. There is a lot to learn, so I am going to break it up over multiple posts.

The basics I’m going to share in this three-part post to start understanding are:

  • Dementia and Causes (like Alzheimer’s Disease)
  • Mild Cognitive Impairment
  • The Brain
  • Science and genes and stuff

First and foremost, dementia is not just a part of getting older. I know, I’ve said this before. This is important because we shouldn’t treat it like an inevitable hip replacement or eyeglasses. We should aim to take action in prevention and planning.

Dementia is a combination of symptoms (such as significant memory loss, disorientation, lack of reasoning) caused by other things, like brain diseases, conditions, and traumatic events.

Dementia is the “umbrella” category of the brain disorder; Alzheimer’s disease, Lewy Body dementia, and Huntington’s disease for example, are one of many causes of dementia. Think of it like this: dementia is like the category of “automobiles” and Alzheimer’s is a specific part of that category, like a purple truck. There are many types of automobiles, like a white car or a blue van, but they are all automobiles. In the same concept, just because you have an automobile does not mean you have a purple truck. So, if you have Alzheimer’s disease, you have dementia, but if you have dementia, this does not mean you have Alzheimer’s disease.

Why does this matter? In some instances, it really doesn’t. But in many cases there are certain treatments that should be considered and certain symptom management approaches that may be different depending on the cause of the dementia.

And guess what? You cannot get dementia by talking about it or by talking to and spending time with someone with dementia. It is not contagious!

Most often, dementia is progressive dementia, which gets worse over time. It is a devastating, progressive disorder that can be caused by many things (an accident, depression, or a brain diseases like Alzheimer’s) and can materialize in different ways at different rates for millions of people.

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Diagnosis of dementia is challenging to say the least. There are many reasons for this, including:

  • It is difficult to diagnose, and a 100% certain diagnosis can only be confirmed upon autopsy (or gathering and testing of tissue). If you like reading research abstracts, you can read more here from NIH.
  • Doctors, like the rest of us, don’t like talking about it and will avoid early conversations because there’s no true medical treatment and no cure for dementia (there are a few drugs that can help with symptoms, but this is still one of the great challenges). Read more about it in this NPR story. 
  • Patients don’t want to know – and for the same reasons. Most people think, if I cannot treat or cure it, don’t tell me. When in reality there is a lot you can do to plan and prepare if you have an early diagnosis.

Prior to a dementia diagnosis, one may be told they have MCI: Mild Cognitive Impairment. MCI does not mean you will develop dementia, but it can be a sign. Learn more from the Mayo Clinics here.

Regardless, if you have signs of MCI, taking action to build new pathways, or synapses, in the brain would be a good idea. Things like learning a new language or learning something else new and novel can do this for your brain. It’s just like going to the gym…you may not love it, but your body needs it.

So now we know what dementia is, what causes it, and why diagnosis is challenging. Next time I will get into what is happening in the brain.

Take a deep breath and find joy and gratitude in your day!

Alzheimer’s Association Tips for the Holidays

The Alzheimer’s Association has many helpful resources for families learning to live with Alzheimer’s or other forms of dementia. Because they have so much…it can sometimes be overwhelming. I will do my best to highlight helpful things for you here at Caregiver Homebase. Here are two helpful things for the holidays.