It Could Happen to Anyone
We’ve heard of someone we know or an acquaintance that has been diagnosed with either Dementia or a Neurodegenerative disease.
We’ve heard of someone we know or an acquaintance that has been diagnosed with either Dementia or a Neurodegenerative disease.
Despite Dementia ad Neurodegenerative Diseases seemingly happen to a lot of people, there is still very little knowledge about it.
If further study and an eventual cure is to be truly achieved, this is something that we all need to work on together.
We realize that no one really wants to truly talk about the latter parts of dementia and neurodegenerative diseases. We believe that this is the exactly sort of discussion that is needed for people to truly understand what it’s like.
Late stage dementia is the point wherein the brain has sustained a significant amount of degeneration. This means that any normal processes that our brain are able to do are no longer possible. A person who is undergoing the latter stage or advanced dementia is generally considered to be mentally frail. Here are a few things that they may be experiencing:
Our brains are where we store our memories. When our brains are no longer healthy or are subjected to a degenerative illness, we no longer have the capacity to store new memories or even access the memories that we have stored for years and years.
As you can imagine, it can be utterly terrifying having to reorient yourself every time you open your eyes. Imagine a life where you constantly need to be told who you are, where you are, and why you are there. What is difficult about this is that there are small periods wherein a person with dementia and other neurodegenerative disorders can slightly remember or recognize family members but it never lasts.
It is our brain that tells the other parts of the body what to do. When the brain has sustained significant damage or massive deterioration, even the things that are second nature to us can be a mountain to overcome each time.
The brain is what tells our muscles to chew the food or to drink the water and not put it into our lungs. When the brain is no longer at the point where it can do its job, those in latter stages of neurodegenerative disorder may find extreme difficulty in eating, drinking, or breathing successfully and safely.
It is to be noted that not all of the symptoms listed above may show up or may be something that they experience for sure.
While no one who personally undergoes the latter stages of dementia and neurodegenerative diseases can tell us from their standpoint what it is like, we have enough observation based data. What we also have a lot of is the accounts from family members who were there and got to see how this diseased ravaged someone that they loved.
The tales of those who have witnessed the latter stages of a life wasted away can tell you what it is like from their point of view. What tale do you have to share regarding the latter part of dementia and neurodegenerative disease?
When it comes to learning more or seeing the other side of an argument, we can always rely on our popular culture to provide us with a look into another perspective. Today, we wanted to take a look at some films that focus about a topic that is a core part of our advocacy: Dementia.
Here are a few films that we highly suggest you watch if you want to explore the topic of dementia:
Still Alice is a novel to film adaptation of Lisa Genova’s novel. It follows the journey of a linguistics professor—played by the incredible Julianne Moore—who now has to deal with the fact that she was diagnosed with Alzheimer’s disease.
Audiences get to watch the changes and shifts in the dynamic of the character’s life. We get to experience the sheer fear of losing control of one’s mind. It is the turmoil which follows a family and a network of friends and coworkers when they are now faced with the future that they may not be remembered one day.
“Away From Her” is a drama which follows a married couple who now have to deal with the fact that the wife has Alzheimer’s. It is an interesting view of a life and a dynamic of a relationship when memories are no longer present to sustain it.
Much like so many who are diagnosed with a neurodegenerative disease, the wife chooses to move herself into a home for those like her. The struggle comes when her husband visits and realizes that she no longer remembers him. Worse, she has started to build a new relationship with someone else. It’s a gritty and realistic look at how families are torn apart because of a disease.
Another touching family film about a pair of siblings who move in with their father because is dealing with his dementia. The title of the film comes from one of the father’s delusions about being able to see the northern lights from the window of his room.
This film provides a good look at how families are left to deal with the pieces of someone’s affliction.
Film, in general, has always been a pretty special medium. Films have the ability to provide a sneak peek into a completely different life and a completely different perspective. It allows audiences to truly experience a life that may be so similar and keenly accurate with their own. Films allow audiences to wholly explore a life that is presently happing to millions all over the world.
Which film about dementia would you suggest others watch?
We at Neurodemcy MRU are very vocal about our advocacy. We are constantly talking about the topics of dementia and neurodegenerative diseases and how we need further research. Today, we wanted to talk about how you would be able to contribute toward obtaining the critical research that we all desperately need.
Here are a few ways that you can help contribute:
First and foremost, it would be important to arm yourself with further knowledge about the present state of research and the present state of both dementia and other neurodegenerative diseases. How are they presently being addressed? What common practices exist to help those that are diagnosed with the illness?
Knowing this empowers your voice. Knowing all this helps you inform others when they ask you about it. Knowing about all this will help you better express your thoughts and better express why we need further research.
Once you have armed yourself with further knowledge about both dementia and neurodegenerative diseases, it would be good to be vocal. If there are any health seminars in your area or any health-centered days, it would be important to attend and converse with others. If you can reach your local government representative, do so.
Engage them in conversation and express your desire for further research. Share your information. After all, no problem ever got solved just by keeping the necessary information to yourself.
One of the fastest ways to really get the word out regarding your advocacy is to go online. Find online groups. Join online forums and organizations. Support events which highly advocate further research. Each and every single post, reply, or even “like” will help spread the information.
In the world of today, action is best achieved when an idea has gone viral. You have a higher chance of your advocacy going viral online. Just be mindful of the words that you choose. There is no need to be vitriolic when you share your ideas. Always remember that there will be those that will disagree with you. Do not engage in anger. Always respond in kindness.
Always remember that further research into dementia and neurodegenerative diseases will benefit not just the current generations but all the ones that are coming after us. The cure for such diseases is important as there is nothing that is more heartbreaking than watching the mind of someone you love withering away to the point where they won’t even remember who you are.
How would you choose to contribute toward critical research?
As you may know, Neurodemcy MRU is quite dedicated to advocating for further research for dementia and neurodegenerative diseases. Today, we wanted to elaborate further on why. As of present, less than three percent of government allocation for medical research is given to neuropathy.
What a lot of people tend to think is that a person who suffers from dementia or other neurodegenerative disease must have someone they can rely on. We always think of caring family members or even friendly and professional institutions that families put the afflicted in. While this is true for some, this is certainly not true for all.
Those who do not have anyone to care for them are usually handed over to the social care system. Countries like the US and the UK both have institutions in place to take in people who do not have anyone to care for them. In the UK alone, the cost is nearly billions of dollars. This will eventually harm society as a whole as the amount needed to fund public care will eventually be too much.
Presently, there is hardly any large effort toward finding a cure or fully understanding what these illnesses are. We need to better understand where this illness is coming from. What starts it? How do we effectively prevent it? How do we help those that are already diagnosed with it?
Most of the focus is developing better medicine to curb any pain or to better sedate those struggling with neurodegenerative diseases. Of course, these medications are highly expensive. Is this why we still don’t have a cure? It is because pharmaceutical companies are so busy trying to make a profit that they realize that there is no profit to be made in finding a permanent cure?
Dementia and Neurodegenerative Diseases affect millions of people all over the world. Countless of lives are torn up by a disease that continue to ravage minds. How many is acceptable until is too much? How many lives should be affected by these until we all galvanize and really push for further research?
We hope that you join us in raising our voices until we have enough pressure to obtain what we want: further research. With everything that we’ve discussed today, we want to know what you think. Why do you think we need further research into dementia and neurodegenerative diseases?
Those that have dementia or neurodegenerative diseases are often robbed of their ability to function normally. Their many symptoms often necessitate the need for a caregiver to be with them 24/7. Being a caregiver can be an extremely taxing job. You, as a caregiver, will be responsible for the well-being of someone who cannot realistically care for themselves and will probably be the least pleasant person when in the throes of an episode.
Being a caregiver is a demanding job especially when you’re caring for a family member and is receiving no compensation for it. Burnout is normally a word that is associated with work. Feelings of constant tiredness, lack of motivation, drop in production, irritability, and lack of empathy are common symptoms of burnout.
As you can imagine, this is not a good state to be in when you are responsible for someone else.
Being a caregiver has a lot of emotional and physical labor so it is important that anyone undergoing burnout should endeavor to recover from it. Here are a few ways:
While it give you feelings of guilt to stay away from being a caregiver, it is important that you are able to get suitable rest and not be the one who is wholly responsible for someone else. There is a reason why vacation leaves are mandated by law. Just because you’re talking care of a family member doesn’t mean that you don’t need a vacation—even if for a few days.
Just because you are the one that is assigned to take care of someone else does not mean that you have to be the ONLY one to care for them. Getting support from other family members or even an actual organization that provides support.
Just because you’re caring for someone else does not mean that you should not care for yourself. Having personal health goals is a great way to keep focused on not just who you are caring for but also on your own progress.
It is estimated that about one in every three adults in the USA provides some sort of partial or total care for other adults. This means that there are a lot of adults that require constant care. This also means that there are a significant number of people out there that may be suffering from caregiver burnout. It is important to be in the right state of being if you are to provide suitable care for someone else.
If you are providing care for someone else, what do you do to recover from caregiver burnout?
Dementia is the kind of topic that everyone commiserates over and fervently wishes that they—or anyone they know—never get. This is because dementia has been known to truly devastate those who have it.
More and more people are being diagnosed with dementia and other neurodegenerative issues. This does not really create a positive outlook over the autumn years of a person. Dementia can hit anyone no matter how healthy they are or whatever their social standing in life. So it is quite understandable if so many people in their prime right now do not have a very positive outlook on what the future holds.
When no one is looking forward to their elder years, it affects how they presently live their lives.
It is no secret that those who are afflicted with Dementia are rather difficult to handle at times. They can rather mercurial at times. They can seemingly be completely normal then suddenly be baffled, frustrated, and even angry.
The loss of control is something that we tend to avoid. We like to remember who we are. We like to know where we are and how to be independent. Dementia takes that from us and it can be terrifying and wholly humiliating. This rage and often difficult temper can lead to disconnect between the elderly and the young. The lessons that we could learn from the elderly is effectively cut off.
One very real but unfortunate impact that dementia and other neurodegenerative diseases have on our society is the spike of those seeking assisted suicides. More and more people are lobbying—and successfully attaining—for laws which allow them to obtain assisted suicide.
Everyone who have read up about dementia and what it does to a person will know that there is nothing good to look forward to. People who have this choice ahead of them choose to either check out of life early rather than wait for their complete decay of their mind and mental functions.
Dementia is something that tends to affect those in the latter stages of their life and we still don’t know what causes it or how to effectively avoid it. This means that this threat, this pall, will always be looming over our heads. Would we be the next ones to be struck down? Is it a loved one? This is why we should not be content with simply managing the symptoms with medication or providing “better” homes and institutions for the afflicted.
What do you think the impact dementia will have on society as a whole?
The trouble with neurodegenerative disease is that it will end up affecting every single part of life in general—not just your own. So we highly believe that people should be more aware of any symptoms that they should be looking out for.
One of the biggest factors of polite and functioning society is the rules of propriety that we all follow. When there is someone in your life that otherwise adhered to these rules but then suddenly seemingly started to disregard them, you may have something to worry about.
It starts small but can be quite drastic. For example, we tend to forgo the use of pants in our own homes. If someone or you thinks its perfectly okay to take off your pants before you sit down to eat at a restaurant, there might be something neurological going on which can affect the behavioral response.
While there are people that are naturally clumsy, the loss of coordination due to neurodegenerative illness is truly disruptive and drastic. For example, a person cannot use their hand to grip an object. Hand-Eye coordination is important to do a lot of things in our life like driving or even writing.
The thing about loss of coordination is that it is easy to pass it off as something that happens because ‘you’re too tired’ or ‘you lack sleep’. So if you or someone around you tells you that you’ve been highly uncoordinated lately, you may want to go in for a checkup.
Otherwise known as a convulsion or a paroxysm, a seizure is normally attributed to a surge of neuron snaps in the brain. They are usually depicted as little lightning bolts in different part of the brain. Seizures usually involve uncontrollable muscle spasms and even rapid eye movement. Those that suffer from seizures must go in for an immediate checkup as this is a clear indication that there is a neurological condition that needs to be addressed.
Seizures can happen to anyone and should be taken seriously.
Neurodegenerative disease comes in many forms so it would be important to get checked if you or anyone you know start to showcase any of the symptoms we’ve mentioned above. Early diagnosis helps to determine the preparation of a person and their family regarding this difficult period of time.
Which symptom of neurodegenerative disease are you familiar with?
Anyone who is perfectly healthy will tell you that life can be pretty tough already. There is so much that needs to be done and yet fully healthy people struggle to get it done. So what would life be like for someone with a neurodegenerative disease?
This is any ailment that targets the nervous system. As an effect, the processes and relay of information which is normally attributed to the nervous system progressively gets damaged and deteriorates over time.
As you may know, our brain uses the nervous system to relay actions or decisions. You are able to move your fingers and other limbs because your brain is telling your nervous system to move your body. A neurodegenerative disease impairs that.
If you’ve ever watched Pokemon, you’re probably become familiar with the Slowpoke. It’s a hippo looking thing with a silly grin. It is said that the brain process of that thing runs so slow that they could lose their tail and by the time they realize it, a new one has already grown to replace the previous one. It’s kind of like that. Your brain is telling the body to do something but the relay is so slow it’s even perceived and mistaken to be partial paralysis.
The reason why we don’t just twitch all the time is because our brain tells our body that it shouldn’t. Someone with a neurodegenerative disease eventually cannot control what their body does. If you’ve ever seen any odd spasms or movements, chances are they have a neurodegenerative disease. This can make everyday life quite difficult. Constant movement means the muscles do not get to rest and are constantly sore or in pain.
Good luck trying to write, drive, or even cook when your hands are twitching uncontrollably.
There is no doubt that having neurodegenerative disease is highly impairing and really affects the quality fo life a person is able to have. We only hope that our medicine advances enough that we are able to have a cure one day.
From your own knowledge, how does neurodegenerative disease affect life?
Dementia is a topic that everyone seems to be familiar with but when it really gets down to the wire, do they really understand what dementia is? This is something we aim to clarify today.
It is not dementia itself that is the illness. In fact, dementia is what they refer to the overall degeneration of cognitive mental abilities. Dementia is a common symptom of a degenerative disease like Alzheimer’s.
Dementia is usually—and incorrectly—assumed to be something that only happens to people of advanced age. Dementia and the other cognitive degenerative diseases do not select age. A reason why people think only the elderly are afflicted with dementia is because a majority of the representation in film and TV are elderly characters.
Dementia affects lives drastically. Here are a few things that it causes:
It is important to note that there are different types of Dementia. Each one has their own specific effects on the human mind and body. If there is anyone in your family that seemingly seems disoriented or has long bouts of faulty memory, you may want to get them checked.
Dementia is something that is mostly glamorized and turned into plot devices in TV and movies. The topic of dementia is suddenly turned into a catalyst that would allow other people to realize their calling or attain closure. Those that struggle with dementia were turned into the giant nuisance that mar otherwise perfect lives.
This is something that we need to fight as well. Dementia should not just be something that is used to convey “what it would be like” or worse case scenarios of another person’s life. Dementia is real and can happen to anyone—this is why we need to find a cure.
What’s your understanding about dementia?
Having that kind of condition could be the worst thing to have but it only happens as you grow older and older, and old age gets to you and make you senile. People fight with this every day and the suffering that they have to endure is emotionally exhausting and taxing, both the victim and it’s close relative or friend. Because in the end, it has affected everybody, directly and indirectly.
First, let’s begin with some simple questions. What is dementia? How do you get it? And is it permanent? These are the common samples once you know someone or if you are suffering with this condition and are desperately looking for answer in order to find some scrap of news that this is just only a temporary thing, like flu, but sadly it is not. But let’s answer these few questions, okay? So that you can get a clear picture about it.
What is dementia?
It is a chronic disorder of your mental process which is caused by an injury or a brain disease that is usually generic. The symptoms of dementia vary, but there are some common factors that keep sprouting when someone has These common symptoms that dominate when to materialise are:
Your memory loss
Speech and communication are affected
You will be losing your focus, and your attention will be limited
Your reasoning and your judgement will be affected as well
And your visual perception will become a hindrance
In short, dementia is like being senile. It is a slow process, and you won’t even notice. It will start with little things; these little things will be nothing to you after first, but as the diseases persist you will notice something is wrong. It starts with you forgetting, and then it will progress heavily as it affects your daily life. When this happens, it has become a serious thing.
How do you get dementia?
It could be an accident, like a car accident or anything that might give you a head injury or old age.
Is it permanent?
The answer to that, yes. There are cases where people who have dementia suffered a lot because their mind is slowly declining and as they slowly waste away, they will be losing their sense of self, their identity in time.
After reading all these, you might have some idea now on what you are up against in the following months or years. It is a good idea to know your enemy after all.
When someone suffers dementia, especially that you know this person is your mom, your dad, your grandpa, or grandma, or in my case my awesome uncle, it is not easy to deal it. Both parties suffer because it is emotionally draining, stressful and heart wrenching. I will give you some ways on how to cope with that kind of situation since we got the explanation about dementia down.
It is hard to cope with that kind of situation, especially when you know that person, and you know how close you are with that person, but that doesn’t mean that you have to ignore the problem and hope it will be gone. No, that won’t solve anything. The only thing that you can do is to be there for that person, bring a positive vibe so that the person who suffers from dementia will know that you care and that they are loved and not abandon. Starting with that, it will become a bit easier to deal with.