Dementia Awareness- A Common Issue of Misunderstanding

Dementia Awareness- A Common Issue of Misunderstanding

A lack of Dementia Awareness in our society is not helping to detect one of the most devastating diseases.  There is a misunderstanding that dementia is all about memory loss.  It is discerning to learn that the average Joe in the street actually does not know what is dementia. Dementia can strike anyone and there are so many types of dementia. Research shows that there will be over 65 M people in the world with have dementia by 2030.  This number is expected to increase to 100M by 2050.

 

The Myth

Dementia is not a part of Alzheimer’s disease. In actual fact,  it is the opposite, Alzheimer’s disease is a type of Dementia.

What is Dementia?

According to Dementia Australia,

Dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease.

Dementia affects thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life.

Types of Dementia

According to Dementia Australia,

It is a condition that has been noted in people for hundreds of years.

Dementia was a relatively rare occurrence before the 20th century as fewer people lived to old age in pre-industrial society. It was only in the mid 1970s that dementia begun to be described as we know it today.

We now know dementia is a disease symptom and not a normal part of ageing.

There are over 100 diseases that may cause dementia. The most common causes of dementia include Alzheimer’s disease, vascular dementia and dementia with Lewy bodies.

  • Alzheimer’s disease
  • Vascular dementia
  • Lewy Body disease
  • Frontotemporal dementia
  • Alcohol related dementia
  • Down syndrome and Alzheimer’s disease
  • HIV associated dementia
  • Misunderstanding  Dementia

    As I mentioned above, most people when asked what is dementia, would mention memory loss. This is a common belief, however as you can see from the definition above,  memory loss is just one small part. From my reading and speaking with some researchers in this field, they all agree that misunderstanding dementia will become a sociological problem for our society.

    As you can see in the Dementia Australia definition, this disease affects the thinking, the behaviour and ability to perform everyday tasks for the sufferers. The person’s typical social or working life is altered as the brain function is altered and there is no mention of memory loss.  There are many cases of dementia where the person simply takes on another identity and leaves loved ones wondering how they have been isolated in that person’s mind.

    Dementia Awareness
    Dementia Awareness

    Personal Experience

    My wife and I are a “carer” for my mother who has these symptoms.  Memory loss is prevalent and its the first thing you observe.  However, it’s the other parts that are hard to manage regarding,

    • not understanding what a real situation is and what is not a real (made up in their mind) situation like did they eat that, take that, move that.
    • What is done or spoken is true or made up?
      • This one is tough because they are not telling untruths on purpose, it is just in their mind, and you have to figure out what is true and what is not true.
    • Managing the paranoia character?
      • The accusation of anything you could think of and even the things you would never have thought you could ever be accused of in normal life 🙂
    • Patterned behaviour requirements.
      • Using boxes of tissues in days because they need to wipe the plates and utensils that you are going to wash anyway, washing every item of clothing every day of the week, rain, hail or shine? 🙂

    People with dementia symptoms are great pattern followers. I think if this was could be said, I would feel that this is a clear sign of possible symptoms.  We are told to help create as many new things to do as possible. To help the brain create new paths, to help the brain do new things and get out of the regular patterns in their mind.

    I feel that the best way is to not ask them what they want but to give them what is good for them.  I found that simple things such as asking what they want to eat or asking them if they want to do this or not, you are sure to get the same answer.

    What we did not notice.

    Looking back, I noticed the “weird” behaviour first but just thought that she was being difficult and being this and that… It was not until the memory issue became obvious that we started thinking about the possibility of dementia.  Again, we have fallen straight into the “misunderstanding dementia” syndrome.

    When we started reading more, we learned about the paranoia and the odd behaviour were actually caused by dementia. However, it never really became the light bulb moment until much later because we never really understood what we read. This is the awareness problem.

    I am saying that we thought the part where she was being difficult, the annoying behaviours, the annoying things that she would say, was just her being difficult.  We now realise that these were the clear signs of symptoms already.  That was dementia.

    Family and friends need to be understanding and accepting the way they are now. Sadly, this is not the case in many cases as people tend to forget the human side of compassion.  I know that this may appear to be a very unfair statement in many cases but its the raw truth.  Dementia patients will be very difficult socially and they will cause your life severe problems.

    Care Providers (have to mention them…)

    The carers we have, from the Chung Hua Association, are the best.  All I can say about them is that they make our lives so much better.  And to top it all off, I see them treating my parents with the greatest of care and respect.  I understand that this care is also exceptional in the community centre as well, with the other aged people.  I have seen it with myself.

    Unfortunately, I can only vouch for the  Chung Hua Association as they are the only ones I have experienced firsthand. I am sure the other care providers are just as good.  I see lots of care providers around and I am sure they provide great care.

    My 5 minutes of Fame and Glory

    A few months ago I was asked by the Chung Hua Association ( Aged Care Providers) to go and participate in a survey. Unknowingly we were the centre of attention with The Australian, The ABC and the WA Miniter for the Age Care, Mr Ken Wyatt being there to talk/interview us.  The National Health and Medical Research Council (NHMRC) National Institute for Dementia Research (NNIDR) was making a short video for Dementia awareness, and we were one of the candidates.  I  did not realise that we were the only person who turned up and so we were the only target for all the invited guests, the VIP guests, and all the media.

    We also met with Dr Bianca Brijnath and Nick Lee ( both from the National Aging Research Institute) who were doing this project (called Moving Pictures). We learned a lot from speaking to Nick later on in regards to similar behaviour from dementia patients.  It was Nick who talked about needing to give them more pathways, as in disrupting their patterns to help their brains work better.

    Anyway, we made all these comments to these people.  What surprised me was that everyone was taken back by what we had to say.  I never realised that the lack of awareness was so wide. I think even Minister Ken Wyatt, was enlightened by our comments.  The whole idea was that we would help make a video.  This will be distributed to non-English speaking families and friends to help recognise and eventually care for those affected by dementia.

    The 5 minutes of fame included being written up in news and being shown on ABC TV.

    Read the ABC article

    Read The Australian article.

    I have included the ABC news segment.  The quality is not the best but its the best I could do 🙂

    Something interesting

    I found this youtube video that I thought I will share.  It is an app that was created to show the world through the eyes of someone with Dementia.  It was created by AlzheimersResearch UK

    Read the comments. It is interesting because it gives a sense of what the level and type of care expectations.  The couple is from a loving partner perspective and the character Joe is obviously from another level.  This is what happens when you need care…

    How we manage our world with Dementia.

    I will make it implicitly clear at the onset that the following is something that works for us.  There is no argument that every situation is different.  However, I would like to think that the basic principles that I am sharing, will be helpful to other people who are in the same position as Sandra and I.

    The key for me being in a dementia environment is to make yourself understand that the things that they do are not normal.  Now, this is one of the hardest things to do as it is very normal for us humans to react on impulse. We get emotional, and we become sentimental.  Unfortunately, in my opinion, that will make the situation worst.  Ignoring the need to treat them as anything other than being different will detract us from treating them with respect and dignity.

    I do believe that this is not easy.  Only people who are not in this environment will say otherwise. The friends that I have spoken to about all these crazy stuff who have parents with dementia has agreed with all the “things” that happen.  Generally, the patterns are very similar.  I am no expert in the dementia world but I will say that every case is different.  Some are severe and some are milder.

    The best things to do – what works for us

    Acceptance and Patience.  We are learning just to let her be who she wants to be in her world.  Again, this is not easy. It is from lots of frustrations, anger and total frustration that has taught us to look at the issue.  However, we have to treat her as she treated us when we were annoying babies, not being able to feed ourselves nor clean ourselves.  This I will admit, is a difficult thing to master.  However as soon as we did that, it became easier for us to deal with the “issues”.  I will say that this is an ongoing learning experience and we are by no means saying that we are saintly and perfect… 🙂

    In our case, my parents have been together for 50yrs+, and as far back as I can remember, they were a do everything together couple.  Hence, my mother is the one who cares and does everything so in her old age; she still looks to do that.  In my mother’s case, she still sees that as her role. When this role is replaced (even partly), the defensive nature of the human being (remember at this stage, the person is in and out of “sanity”) comes out.  So it is tough to understand the real reason for that “weird” reaction.

    The hard part is that the truth is intermingled with the half-truths and the nontruths… So this mix is difficult. The way we manage is what is important, we try to find the truth. What is not important, we agree with them and ignore.

    In summary, what works for us is learning to have more patience (more than you ever thought you could have) and ignoring the “annoying” ways.   This is an ongoing learning experience for us… :-).  As I have mentioned earlier, the best way is to just do what is good for them and not let them do what they want.  This will be more of a MUST do in the later stage.

    Their need to do things that totally do not make sense will drive the average person bonkers… 🙂

    We are lucky…

    We draw on conversations between friends and associates, and readings from the internet to try and make sense. In our case, I feel that the fact that they are still a couple does shield us from more issues.  My father, who has no dementia symptoms, although has mild Parkinson’s, deals with most of the “weird” behaviour.  In many cases, when there is a single surviving parent and they have dementia symptoms, I believe that it is more difficult.

    What’s Happening Now.

    Just this week I received an email from the National Health and Medical Research Council (NHMRC) National Institute for Dementia Research (NNIDR)  inviting expressions of interest from people living with dementia and carers/former carers of people living with dementia to be on their Consumer and Community Involvement Program Reference Group.

    I gladly volunteered to see if they would accept me into the Reference Group.  I wanted to join because I feel that it is a great way for me to give back to society.

    — In fact, this prompted me to write this blog as I have the intention to do this for a while now.—

    The main purpose for me wanting to jin the Reference Group is so that I could give the time and share my exposure to an unfortunate process of growing old.  In truth, there is no possible way for us to grow old respectfully nor in any acceptable respectful way.  However, a better understanding of what happens to us at that stage of our lives may help the people who will eventually care for us.  I am speaking of the carers that will be the people who will help us finish our life in this world, whoever that may be…

    HOPEFULLY….

    Please feel free to contact me for any comments or questions. I have included lots of links to people and organisations, so they are probably going to know more than me.  I would think that people such as Dr Bianca Brijnath and Nick Lee would be the best point of contact so I am happy to pass your details and questions to them.

    To conclude this blog, I want to leave with this really good message made by Alzheimer’s Research UK

    I think it is a good message to think about…

    To end this on a positive note, I found a CNN documentary regarding a village in the Netherlands for people with dementia.

    source:

    New film project to raise dementia awareness in migrant communities, by Nicolas Perpitch

    https://www.nhmrc.gov.au/research/boosting-dementia-research-initiative/nhmrc-national-institute-dementia-research-nnidr

    https://www.theaustralian.com.au/national-affairs/health/language-barrier-an-added-problem-for-families-dealing-with-dementia/news-story/af4b524e1a192fd34766cb91061c3a9a

    Feature photo

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2 Comments
  1. Thanks for sharing your experience and view on dementia. I completely agreed with you that the awareness about this potentially debilitating illness is still very low in the community. I am very interested in creating awareness in an effective way, and still searching ways and measures that can be used to spread correct informations on this disease. Dementia is on the rise, and we are not ready for it. Hope, together we would be able to share ideas on this issue. Thanks.

    1. Thank you for commenting on my blog. Dementia is not an easy topic and it is sad to say that dementia is not in the public eye.

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