What is Dementia Exactly?
Understanding a Most Debilitating Disease
Happy Tuesday! I thought we might do a little in-depth study of what exactly dementia is so that we’re all on the same page.
I know that I for one was clueless about this awful disease until my grandmother was diagnosed with Alzheimer’s back in the 1990’s. I mean I’d heard of it, but what was it really?
Defining Dementia
First, it’s important to understand the hierarchy of dementia. Many people think that dementia and Alzheimer’s are interchangeable but they aren’t.
Dementia is an overarching diagnosis. It’s at the top of the hierarchy. It is a disease with specific subtypes, including but not limited to Alzheimer’s.
According to the National Institute on Aging, dementia is the loss of cognitive functioning - thinking, remembering, reasoning - to such an extent as it interferes with a person’s daily life and activities.
These symptoms or losses of function occur slowly as neurons stop working, lose their connections to other brain cells, and eventually die.
It’s normal for your neurons to lose function as you age, but with dementia, the loss is much higher.
For my father, his decline began as many as ten or so years ago. He worked from home almost exclusively by then, having resigned his position as CEO of a non-profit organization in 2013. He still consulted with the group but did so from home.
Meanwhile, I was helping my mom clean every couple of weeks. He would call me into his office. “Hey Kirb, I can’t seem to get logged into this site. Can you help?”
Of course, I knew most of his logins, and he kept a little log book of them, although the log book was quickly becoming a big mess. I helped him get logged into something he could previously log into in his sleep. I could see the early signs.
Sometimes, we see them, other times, it just seems like a normal bit of forgetfulness, at least at first.
Signs of Dementia
How can you tell if you or your loved one has dementia? There are some clear signs the disease is taking root:
Confusion
Poor judgment
Memory loss
Difficulty with language - speaking, expressing thoughts, and so on
Getting lost easily in once-familiar places; wandering
Problems with finances - paying bills, managing money, and so on
Repetitive questions - and in our case, statements
Not being able to find a word or using unusual words to refer to something
Being unable to, or taking a longer than usual amount of time to complete normal daily tasks
Loss of interest in activities they once enjoyed
Impulsivity
Lack of empathy
Difficulty with balance and movement
Inability to recognize once-familiar people
Hallucinations, delusions, and paranoia
Now, you may look at some of these and think, Geeze, I forgot where my keys were last week. Do I have dementia?
Probably not. It is really the growing collection and increasing severity of these symptoms that is your clue.
Dad’s Symptoms
Dad always knew who I was, who Mom was, and who our dog, Charli was. When it came to my kids, however, he couldn’t keep them straight. One of my four daughters visited more regularly with her three kids and he recognized them, but I doubt he could put a name to them if forced.
But he was good at covering, “Who’s that pretty girl with you today?” “Who did you bring to see me?”
I don’t know if he knew my brother’s three kids by name. He recognized them but they are also older.
As I mentioned in yesterday’s article, he had great difficulty seven years ago when I was preparing to move in. He couldn’t handle a sorting task at all, and I completed the task for him.
He didn’t have a lot of trouble with language at that point, but by the last year or so, we realized he’d pared his communication down to about ten or so phrases that he used all of the time.
You could talk to him and he would fake a conversation with you, snippets of the once very intelligent man shining through, but for the most part, his language was significantly depleted by the end.
Probably the most annoying thing was how predators prey on people like my father, and to some extent, my mother as well. For the last two to three years, all Dad did was sit and play games on his iPad. That, of course, comes with ads, which he couldn’t decipher from a real game.
He also was watching a ton of porn. This is a symptom not mentioned above, but common in some forms of dementia. I ended up putting parental controls on his iPad so he couldn’t access the Internet. His fix was to watch a lot of women’s sports.
Types of Dementia
As I mentioned, dementia is sort of a general diagnosis. There are specific types of dementia, and we were in the beginning stages of having his particular type identified when COVID hit. His appointment with the neurological psychologist was cancelled and we never rescheduled.
Alzheimer’s Disease
This is the most common type of dementia and many people think this is the general diagnosis instead of dementia, but it isn’t. It’s a subset.
Alzheimer’s Disease occurs when your brain has abnormal levels of plaque and tangles.
Beta-amyloid is one such protein, which builds up and lodges between brain cells. Tau protein is another that builds up and forms tangles inside the nerve cells of the brain. With Alzheimer’s Disease, brain cells lose connections.
Alzheimer’s is often diagnosed by common dementia testing, such as neurological tests, medical tests, and so on, but is ultimate a diagnosis reached by eliminating other diagnoses.
Frontotemporal Disorders
This describes the area of the brain most affected - the frontal lobe and the temporal lobe.
The changes in the frontal lobe lead to behavioral changes like lack of empathy, aggression, and impulsivity.
The changes in the temporal lobe lead to language and emotional difficulties. The patients can often have trouble finding the right word or using language to articulate needs.
This is a less common type of dementia, which is believed to be caused by those protein buildups mentioned previously. The true cause is yet unknown, as is the case for many forms of dementia.
It’s believed there’s a genetic component to Frontotemporal disorders.
Lewy Body Dementia
Lewy Body dementia is caused by deposits of what they call Lewy bodies. Makes sense right? But it doesn’t help us understand it.
Lewy bodies are made up of proteins called alpha-synuclein that are deposited in the brain.
Diagnosing Lewy Body dementia can be a challenge because the symptoms are common to other brain disorders as well. People with Lewy Body dementia often have problems with movement, in addition to the other dementia symptoms.
Folks battling Lewy Body dementia might have problems with sleep, movement, hallucinations, mood changes, and cognitive decline.
This is the second most common form of dementia, behind Alzheimer’s.
Vascular Dementia
This type of dementia is more about a loss of blood flow to the brain, and often comes as the result of a stroke or hardening of the arteries in the brain (atherosclerosis).
It can also be caused by lots of smaller strokes, heart disease, high blood pressure, diabetes, and high cholesterol.
It carries many of the same symptoms as the general diagnosis of dementia, but the cause is better known.
Vascular dementia can be diagnosed with medical imaging and testing. It can also be controlled to some extent with medications and therapy to reduce the risk of additional loss of blood flow, exercise, and cognitive rehabilitation therapy.
Mixed Dementia
For added fun, it’s possible to have two of these forms of dementia combined into your one brain. Terrific, right?
It’s common for people to experience Alzheimer’s disease with vascular dementia, for example.
In fact, I didn’t find this in my research, but I would have to guess that vascular dementia can be combined with any of these, since the cause is so clearly medical in nature.
LATE Dementia
No, this isn’t late-stage dementia, but a recently identified additional form of dementia. LATE stands for Limbic-predominant age-related TDP-43 encephalopathy - and yes, I copied and pasted that from an article.
This was discovered through the autopsies of folks who had dementia. While it has the same symptoms, the causes are different.
These autopsies showed that folks with LATE dementia had abnormal clusters of this stuff called TDP-43, which is involved with other brain disorders.
LATE is found to be another form of dementia that mixes commonly with others, like Alzheimer’s.
Unfortunately, there is no diagnosis for LATE while the patient is alive. It’s only through brain studies after death that this form of dementia can be detected.
What Causes Dementia
This is where it gets fun for me. I’m a sciency type of girl and I love to research stuff.
As you’ve read, dementia is often caused by a buildup of some type of protein, depending on the type of dementia we’re talking about. But what causes those buildups?
The answer is still unclear, but there are some great studies happening.
Sometimes, it’s another disorder. For example, Creutzfeldt-Jakob disease, a rare brain disorder, can cause dementia. Other diseases that cause dementia include:
Huntington’s disease
Repeated traumatic brain injury, which causes CTE - chronic traumatic encephalopathy
HIV-associated dementia (HAD)
Parkinson’s disease
One term that’s starting to be thrown around is Diabetes 3. Studies being done on Alzheimer’s disease are showing a similarity between Type Two Diabetes and Alzheimer’s disease:
Insulin resistance in the brain
Oxidative stress
Inflammation
It’s important to note that the research with this is relatively new and that the term Type 3 Diabetes isn’t an official medical term, but one researchers are using to describe the similarities.
Can You Treat Dementia?
The real answer is no, you cannot. People with dementia will not see a turnaround in their symptoms.
There are some medications that can treat the symptoms associated with dementia and some that are believed to slow the progression of the disease.
I know, for my father, the medications were undesirable, causing side effects that he didn’t like and refused to tolerate.
Most medications treat the symptoms. For Dad, we didn’t really deal with that until his last five weeks.
He woke up one Sunday morning time-shifting and later in the day, hallucinating. That was the very last day my father spent in this home. I remember Mom saying after he passed that when we took him to the hospital in the middle of the night that night, she never thought he wouldn’t come back.
Anyway, other ways to treat include occupational therapy to help regain lost skills or redesign how to accomplish tasks and perform activities of daily life, and speech therapy, particularly for patients who’ve had a stroke. Sometimes music and art therapy are used to help, but these are more for calming, at least from what I’ve read.
Diagnosing Dementia
I know I mentioned earlier that there aren’t really tests for dementia, but there are some things doctors can do to rule out other disorders, and some tests have become available.
For example, there are now blood tests that will measure levels of beta-amyloid, but this test alone isn’t a good diagnostic tool. Other blood tests are being researched.
The testing you’ll most often see are cognitive and neurologic tests. I laugh at my mother when I take her to the doctor because the nurse will give her three words to remember and ask her about later.
She says she concentrates so hard on remembering those words. Her fear is real, and valid, as I see signs of decline in her.
Brain scans can be a great diagnostic tool, especially if you’re looking for vascular dementia.
Often, doctors will refer a patient for psychiatric evaluation if they suspect dementia. This can help rule out other disorders like depression or other mental health conditions.
Genetic testing is another tool that can be helpful for some forms of dementia. This is a tool that can detect genetic variations, but it is not a diagnostic tool as such.
Cerebrospinal fluid tests (CSF) can help clinicians detect the levels of protein that are in the fluid surrounding the brain.
Who’s at Risk for Dementia?
Unfortunately, the biggest risk factor for dementia is your age. The older you get, the more likely you are to develop dementia.
But there are other risk factors, such as smoking, uncontrolled diabetes, high blood pressure, overuse of alcohol, and family history.
Wrapping Up | What is Dementia?
The one type of dementia that I didn’t mention is early-onset dementia, which is dementia that begins before age sixty-five. I don’t know that much about it and it feels like a critter to explore all by itself, so we’ll do that another day.
My dementia journey with my father won’t be anywhere close to the same as the journey I’ll take with my mother. This I know for a fact.
While Dad was always calm and gracious, until the last five weeks, she is very mean, especially when you accidentally call her out on something like repeating herself or asking something twice.
While I was dealing with Dad’s journey, I joined a Dementia Support Group on Facebook. It was immensely helpful and insightful.
What I learned that was most valuable is that I am not alone. There are thousands of people going through the same thing I was going through, and each journey was different.
I strongly recommend finding such a group if you’re a dementia caregiver or someone who has a loved one with dementia.
If you aren’t the caregiver, you need to understand that the person who is the caregiver is under more stress than you can imagine and that their life is not easy. Your job is to be supportive, and not undermine what they’re doing.
Until tomorrow….