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!

Laughter in Caregiving

As it turns out, caregiving can be quite hilarious at times. We have days when we get to laugh out loud at the sweet or ridiculous moments that sprinkle throughout the day. And each day is different; yesterday, for example, my dad had a really bad day and there was nothing to laugh about…but today he’s been a total goofball.

AgingCare.com has some great stories that people have shared that can help lighten your day. Read these when your day may not be so full of fun.

LAUGH

Kindness at the Airport

As a highly independent 30-something, I have learned how to travel quite easily with little fuss; it has become second nature essentially. I know how long each step of the process takes and I push my limits with time and access when I can.

This winter I am flying with my mom and dad (we are headed to Minneapolis to visit my brother and his family) because my mom needs a little extra help with my dad on a longer flight.

Before our flight to Minne, my parents flew into Phoenix to stay for a night. The hotel at which they were staying was not a dog-friendly hotel, but I asked the front desk associate if it would be ok if I brought my dog for therapy for my dad. She was the sweetest! She said yes, but only if I brought the dog to see her too.

When I came back with the dog, she not only stopped and pet my LoLo, she also talked to my dad and was so kind in understanding why he was unable to communicate back. She smiled and said “God Bless” as we left for the airport the next morning, genuinely excited to know that we would be back in a few days.

Getting from home to the airport in an Uber was pretty standard…smooth sailing.

I really didn’t think much about the flight – I knew I would just be there to help however I could and we would be just fine. The logistics were fairly simple and I anticipated a slow pace, so no surprises there.

What I didn’t anticipate was the kindness we would receive from airport and airline employees as well as total strangers.

Upon arriving at the airport and needing a wheelchair and special access forms we were greeted and supported by Chuck, the kindest gentleman who made sure my dad was all set and comfy in his certainly uncomfortable airport wheelchair.

My mom, Chuck, my dad, a sweet little older woman, and I made our way through the bowels of the airport to security. Chuck made sure that I was able to get through the assisted access point with my family (dad’s only supposed to get one assist) so that I didn’t have to go back through the standard security line. Then as I stood next to my dad right before the screening process, doing my best to keep him from getting out of his wheelchair and making a run for it, Chuck took my backpack, coat, purse, and grungy boots and put them on the conveyor so that I could stay by my dad’s side. We were just fine on our own after security, yet he stayed with us and set us up in an optimal position for waiting and boarding. He did this all with a smile and a few jokes. What a pleasure!

Upon reaching the gate, we settled in, ate some lunch (thank goodness for La Grande Orange in the D gates!), and waited a few moments until it was time to board. I wasn’t able to fool the gate agent into letting me go on the plane early with my parents (reminder, dad only gets one assist); although an adorable older woman who was also waiting to pre-board said to me “they should let you!”

As I sat and waited for my B 38 spot to be relevant, a tall middle-aged man approached me and spoke closely in my ear, “were those your parents you were with earlier?”

“Yes,” I nodded.

“Did your dad have a stroke?”

“No. He has young-onset Alzheimer’s,” I replied.

“Well he has such kind and life-filled eyes. God bless you.”

And he walked away.

It was such a sweet and touching moment. And a reminder that we are ALL fighting a battle (I assume he has someone in his life who has had a stroke), and the best we can do is be kind to one another.

On the plane, dad and mom were settled and we had a great flight. The flight attendant checked in on us frequently, always asking if we needed anything special like a lid and straw for my dad’s drink. She never once seemed bothered our put out of her way.

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Dad watching passengers and mom ready for our wine

What did I learn?

  1. Always ask – you never know when you’ll get a yes.
  2. Don’t downplay the assistance your LOWD needs – getting help makes it so much more enjoyable. Bring a letter from a doctor stating the diagnosis and share with everyone providing service; it makes it a more enjoyable experience for everyone.
  3. Take a moment to take in the kindness – there is so much out there if you pay attention to it.

Keep up the good work, superheroes!

Claim 10 Minutes Each Day

Caregiver wellness matters more than most other things. Laughter is one step toward wellness, but healthy food, exercise, and time to yourself doing what you want to do is essential. We have to be creative here, because many of you right now are thinking, “yeah, right. If I had time to eat well, exercise, and do enjoyable things… everything would be ok.” So let’s make it so. No more excuses.

Let’s start simple. Take 10 minutes for yourself every single day. Find peace, serenity and joy in those 10 minutes. Reset.

How do we start?

  • Identify the challenge to finding 10 minutes in each day. The best way to solve a problem is to really understand the root of the problem (in this case, time).
  • Call a friend or family member and ask him or her to brainstorm with you on ways to find these 10 minutes for you every single day. Some ideas: Can you get up a little earlier than your loved one like my mom does? Can you find an activity that entertains your loved one for 10 minutes? Can you recruit help from another friend or family member to sit with your loved one so you can escape for the necessary time?
  • Write down your plan of action and keep a record of your 10 minutes of wellness every day for 21 days (a simple sheet of paper with the day and a check mark when you follow through will do). This will help you build a habit and make it a part of your life. Once you nail 10 minutes, start to add 2 minutes to it each week until you have an hour that is YOURS.

Then the question is, when you find that 10 minutes, how do YOU best restore your energy? If it were me, I would do a few yoga poses and some breathing.  Others may want to simply sit and enjoy a cup of coffee. Perhaps read a chapter in a book. Have some ideas so that you don’t waste any of your precious time when you get it. And no chores or errands! This is just for YOU.

 

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.

What the hell is going on? (Part 2)

If you haven’t yet read Part One of “What the hell is going on,” see that prior post to learn more about what dementia means.

So you suspect a loved one may have dementia. Here are the three things I would do first.

The most important thing right now is to get your loved-one with dementia (LOWD) to have the important conversations that need to occur, specifically about their care plan and wishes and preferences they may have. This is easier for some than others. You may want to watch the movie, Still Alice, to get a little understanding of what this may be like. These early conversations are important because they give the LOWD the dignity and respect of being a part of major life and care decisions while they still can.

There are many resources that can be helpful for you at this early stage. Here are two examples that we have here in Arizona.

EPIC – Early-stage Partners in Care – (http://www.alz.org/dsw/in_my_community_22265.asp)

CarePRO – Alzheimer’s Association + ASU + others (http://www.alz.org/dsw/in_my_community_19976.asp)

One of the smartest things you can do is encourage a trip to the doctor and get an early diagnosis (or understand what may be going on if it is not dementia). While there is no cure for the diseases leading to dementia, early diagnosis is vital in stacking the cards in your favor for the best possible scenario in care and medical management. It also helps you have the conversations and take the actions mentioned above.

Finally: take a deep breath, and have a come-to-reality moment with yourself and anyone close to the LOWD. Your loved-one is going to say things that don’t make sense, accuse people of doing things they have not done (stealing, trying to trick them…which gets difficult because strangers may actually try to take advantage at some point), argue with you about things that seem ridiculous, perform activities that seem odd, experience hallucinations, and a whole host of other strange things.

Click here for a list of common symptoms.

You MUST remember: this person’s brain is no longer functioning normally. The cells in the brain that allow for “normal” function are dead or dying. Their whole picture is becoming spotty and this can be very confusing or scary. But on the inside, this is still your loved one. They simply need a different kind of care and understanding now.

You must now think of this every single time you speak with them. When they say something to you that makes you want to argue back, be defensive, or react in a less-than-kind way, stop yourself. Do not take this personally – they are not trying to hurt you…they are scared.

There is a powerful book that I wish I had years earlier than I did. I recommend anyone with a LOWD read:

A Dignified Life: The Best Friend’s Guide to Alzheimer’s CareBy Virginia Bell and David Troxell

There are many ways to handle difficult conversations and encounters with this person…and this can be the most empowering thing to learn and exercise early. You’ll be looking at and talking to the father, mother, wife, husband that you know so well, and they will say something to you that is way off base, potentially rude or offensive. Do not react to the father, mother, wife, husband that you know…react to the person whose brain is being taken from them and who needs gentle, loving kindness.

And then…?

This is a process and it will take a lot of strength and courage. You’re starting to do the right thing by learning more. Just keep that up, do what you can, and don’t be so hard on yourself. One breath at a time. Your wellness is just as important as your LOWD. I will have MANY more posts on that.

Peace.

Quick Video: Going home for the holidays

Here are a few thoughts and tips for those of you going home to see a loved one with dementia (as a full time caregiver viewing this, this is perfect to share with your visiting family). In this video I explain three simple steps:

  • Preparing the loved one with dementia to see you
  • Being mindful in the way you approach your loved one
  • And showing gratitude to the person in the family who provides or manages the bulk of care

View video

holding hands holiday

What the hell is going on?

So someone close to you in your life is starting to act strangely (forgetting events or conversations, not recognizing your sarcasm like she used to, acting confused in moments she shouldn’t be, imagining things, acting defensive, and many more lovely things); you are wondering if it is dementia.

First of all – what the hell is dementia?

Dementia is not a normal part of aging; it is a progressive condition caused by many diseases, the most well-known and largest cause being Alzheimer’s disease (but there are many different kinds). It leads to an individual, typically 65 or older (but in some cases as early as 40) losing his or her brain function in a way that is atypical to the natural aging process. It leads to impairment in five areas:

  • cognitive
  • functional
  • physical
  • psychiatric, and
  • behavioral

Each may be seen at different times in different ways for each individual. We often notice it first related to short-term memory loss and confusion.

This video is an excellent example of what to look for if you are not sure if it makes sense to be suspicious.

When someone has dementia, the hippocampus (a fancy little wish-boney shaped thing in the brain responsible for making memories each day) starts losing brain cells. They simply die. Ok – not simple…it is a little more complex, but for right now…they just die. In a properly-functioning brain, the hippocampus makes memories as you live your life, and then at night, when you sleep (why good sleep is so important!), the hippo transfers those short term memories to another home in the cerebral cortex and those memories are stored. That’s where long-term memories live.

When the hippo cannot do its job, memories do not get stored. Thus, a person with dementia loses the actual memory of something that has recently happened…it is not there, so it cannot be recalled.

Let me be clear with you – nothing about this situation you are currently trying to decode or anything that is going to come in the future related to this is going to be simple or easy to understand. If you feel confused, overwhelmed, sad, or panicked… that’s about right.

Now, that doesn’t mean there can’t be positivity, love, laughter, and peace…but don’t worry if right now you feel like that would be impossible. You’ll get there.

I think (based on my hindsight) there are three major things to focus on at this point:

  • Get the loved-one to have important conversations
  • Get to a doctor to get an early diagnosis (and get a 2nd and 3rd opinion)
  • Start the process of resetting your mindset about this person

These are my recommendations and I will elaborate on them more in part 2 of this post.

Deep breath. You can do this – and you’re not alone.