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 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,
Dementia is the umbrella term for a number of neurological conditions, of which the major symptom includes a global decline in brain function.
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 began 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.
As I mentioned above, most people, when asked what dementia is, would say memory loss. This thinking is common, and 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 changed, and there is no mention of memory loss. There are many cases of dementia where the person takes on another identity and leaves loved ones , wondering how they have been isolated in that person’s mind.
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 real 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 real and what is not valid.
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. We are told to help create as many new things to do as possible. We are told to help the brain create new paths, to promote the brain do new things, and get out of the regular patterns in their mind. I feel that the best way is not to ask them what they want but to give them what is right for them. I found that simple things such as asking what they want to eat or asking them if they’re going 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 apparent 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 caused by dementia. However, it never really became the light bulb moment until much later because we never really understood what we read. This moment is an awareness problem.
I am saying that we thought the part where she was difficult, the annoying behaviours, the annoying things that she would say, was her being difficult. We now realise that these were clear signs of symptoms already. That was dementia.
Family and friends need to understand and accept 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 challenging 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 exceptional care.
My 5 minutes of Fame and Glory
A few months ago, the Chung Hua Association ( Aged Care Providers) asked us 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 single target for all the 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 extensive. I think even Minister Ken Wyatt, was enlightened by our comments. The whole idea was that we would help make a video. The video 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 the news and being shown on ABC TV.
I have included the ABC news segment. The quality is not the best but its the best I could do 🙂
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 typical. Now, this is one of the hardest things to do as it is very reasonable for us humans to react on impulse. We get emotional, and we become sentimental. Unfortunately, in my opinion, that will make the situation worse. 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. I have a friend who describes all the same symptoms in her mother. He describes the same “crazy stuff” that is common with dementia. 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 act, 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 challenging. The way we manage is to filter what is necessary so that we can try to find the truth. Those thoughts that we filter as “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. Ignoring these “annoying” behaviours is an ongoing learning experience for us… :-). As I have mentioned earlier, the best approach is to do what is right for them and not let them do what they want. Their need to do things that 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, but has mild Parkinson’s, shield us from those behaviours as he is her source of conversation. In many cases, when there is a single surviving parent, and they have dementia symptoms, I believe that it is more complicated.
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). The NHMRC was 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 an excellent 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 primary purpose for me wanting to join the Reference Group is so that I could give them time and share my exposure to an unfortunate process of growing old. In truth, there is no possible way for us to improve 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…
Please feel free to contact me with 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 perfect 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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