Dementia : I Am Still Here

Dementia : I Am Still Here

After writing the last post on Misunderstanding Dementia – A Common Issue, I have developed more passion to share the awareness of Dementia.  The response I received were all very complimentary.  Interestingly, when talking to people, they are still fixated on the memory loss as the primary symptom.  In this post, I want to share on some of my research on the good things that you can do as friends and family of dementia.

I find it challenging to write this post as I am never one to dwell on negatives. However, over the years of caring for my parents, I have a great appreciation for the aged care industry.  Watching these people who cared for us all those years now become people that do things you are not accustomed to is not pleasant.  I don’t think this is anything new as every reader will agree.

Cultural Issue

Too many people still feel the embarrassment and taboo of talking about these topics.  I think the ethical side and those from the older generation is very much to blame.  I am slowly realising these issues as I speak to more people.  I feel that the misunderstanding is a result of not wanting to be associated with the stigma of an illness such as Dementia. It is not due to a lack of understanding of facts…

As they say, we immigrants bottle our culture and we take it out and use it as when we see fit. However, the place where we come from has been progressing with time and when we look back, we find that we have indeed been living in a culture that has been stuck in a bottle.

When I was trying to get my last post out to the general public, I started to see that there are many associations here in Australia. To my surprise, Malaysia and Singapore had a few too.  I should touch on that in upcoming posts.  Reading the news from those places made me think that people like me should share our thoughts on this topic.  I call my self a “Banana” (Yellow on the outside and white on the inside), and we should help bridge the gap.

Life Continues But in a Different Way

In my opinion, as bad as this topic is, my parents are still relatively healthy.  For example, my mother is now playing mahjong and cards four times a week (when they go to the Chung Wah Community Centre) and she has never played that over the years.  She only started playing cards after going to the centre.

I cannot speak highly enough about what the Community Center means to us.  The staff are great at making the experience fun and comfortable.   There are many people with different level of care there and are well cared.

I do encourage that friends and family of the aged do check these places out.  Another topic for the next blog… 🙂

My parents look forward to going there.  They bring their newspaper, snacks (homemade by us :-), and they come back telling us of who they met and what they did…. who did what, who was funny…  who was a pain…etc.  There was even someone who made Texas style BBQ sauces and they bought some back for us.  All of them are living a whole new, different life but they are existing and relatively enjoying their life.

Having dementia, as bad as it is, has many positives as well.  My mum now plays mahjong and cards… 🙂  Recently, she was also trying to play pool.

How the Community Centre Works.

The great thing about the community centre is that participants get to mingle and mix with together. A van comes in the morning to pick them up between 8:30 and 9 am and takes them back around the 2:30 pm mark.

I have been there and they are able to do the following,

  1. Group Exercise
  2. Play Games such as Mahjong. Not sure if old Asians play scrabble 🙂
  3.  Staff are there to encourage communication,
  4. They have morning tea, lunch, afternoon tea and even dinner if required.
  5. Watch television.

The greatest benefit is that they are able to do relatively normal things.  They still think of what they want to eat, and respond pretty well to conversations.  It may not be what we consider as normal conversations, but it is still a conversation.  There are many sad stories but its how you make of a situation.

Speaking to a relative who has family in Melbourne last night, there is a lot of people who do not know of these kinds of help.  I encourage readers who are in similar situations to seek these kinds of help. Whether you are in Australia or another country, the relief from 24hr care will help maintain good relations.

On the occasion, there is an outing that happens and they go to see places. They were taken to go fishing one time too.  Now that is a good life.

The Inspiring Stories.

I felt inspired by a guy in the US who made a documentary about his mother and dementia.  The way he goes about doing things shows that you can still have normal conversations, it’s just on different topics.  There was a video they went out to have ice cream.  When you have acted as a carer, you notice the small things. You say to yourself, wow, we can also do that, now that is a good idea, why did we not think of that….etc

 

You can see the sad side or the encouragement side.  I prefer to see a great effort he makes to create a difference in the story.

I encourage readers to share their comments and create awareness that there is life even with the discomfort of this illness.

There is a video on a Dementia Village that I attached to my post on Dementia, where there was this social worker who had the best attitude in dealing with the awkward behaviours of citizens of the village.  I have started the video below at the stage where she was being interviewed,

 

From my experience, I do find that the carers all have this kind of mindset, or at least similar.  Having seen a few carers over the years, they are a special breed of people.  They give respite to the primary carers and I tell you, it is very appreciated.  It also makes life easier.  My advice for all carers is to make sure you take full advantage of these services.  I appreciate that many of these services may not be affordable for many people but it is worth seeking the alternatives.

Personally, the more I learn about the issues, the easier it is for me to deal with situations. It is not about me expressing my assumed knowledge, it is all about sharing that its a work in progress.

Some Interesting News – Promising News

There is an article talking about that there are ways you can do to prevent Dementia.  This was published by The Economic Times, titled Good News: Now, dementia can be predicted 10 years in advance.  It quotes research that was done by the University of Copenhagen in Denmark.

 

“If those individuals at highest risk can be identified, a targeted prevention with risk-factor reduction can be initiated early before disease has developed, thus delaying onset of dementia or preventing it,” said Ruth Frikke-Schmidt, a professor at the University of Copenhagen.

The study looked at data on 1,04,537 people in Copenhagen, Denmark, and linked it to diagnoses of dementia.

Researchers found that a combination of age, sex and a common variation in the APOE gene could identify high-risk groups, with a seven per cent risk for women and six per cent risk for men in their 60s.

There was a 16 per cent and 12 per cent risk, respectively, for people in their 70s; and a 24 per cent and 19 per cent risk, respectively, for those aged 80 years and  …

Dementia Rates Declining?

There was one article that I thought was interesting.  The article mentioned that researchers found that those who completed high school were less prone to develop symptoms of dementia.  They talk about being healthy to reduce cardiovascular issues. Doing this may have some influence on the risk of adopting symptoms of dementia.  However, another result showed a rather surprising result.  This was that overweight and obese study participants actually had a lower risk of dementia than others. (source: https://www.senioradvisor.com/blog/2017/01/the-good-news-about-dementia-rates-theyre-dropping/)

They mentioned that this is still too early to be factual, as other studies connect excess weight with heart disease, which can raise dementia risk. The reasoning may be that the extra weight late in life might offer some protection against cognitive decline.

Is It True?

To me, that may have some truth.  When I recently spoke to a pharmacist he mentioned that the in traditional medicine, people are taught that if you have high cholesterol, you must remove it.  In fact, that level of cholesterol is the basic building blocks for the other parts of the system. Removing it will dampen that body sequence to develop its own “medicine”.  Anyway, I am no medical practitioner but when this was explained, it was really interesting.

This is a part taken out from the article,

Dementia rates are in decline

The percentage of adults 65 and older with dementiadropped from 11.6 percent in the year 2000 to 8.8 percent in 2012, according to data analysis published in the January 2017 issue of JAMA Internal Medicine. That analysis bolsters another reported released in 2016, which found that dementia rates droppedby a total of 44{e84228ce8c9f7001611629be1db85467cf541581cf1fd5424de0612b3249e3f5} since the late 1970s through 2008.

Any decrease in dementia rates is good news, not only for seniors and their families, but also for public health. Dementia is the most costly condition a person can face, because it can progress slowly over many years, during which patients require round-the-clock supervision to prevent wandering, falls, and distress. Caring for a loved one with dementia is more than a full-time job, and professional care is expensive. The Alzheimer’s Association says the total cost of caring for people with dementia in the US was $236 billion in 2016.

My Research

However, my research from the Australian Institute of Health and Welfare show,

The prevalence of dementia has increased—it affected approximately 252,000 people in 2006, which represents an increase of 40{e84228ce8c9f7001611629be1db85467cf541581cf1fd5424de0612b3249e3f5} to 2016.

There is a link available to the Australian Bureau of Statistics on Dementia.

Whether the rates are increasing or not, the fact of the matter is that people need to care in the best possible way.  As the world is going into an ageing period of our history, we are going to see more issues than less. Like everything old, it needs TLC and maintenance is not going to be cheap.

I was inspired to write this follow up after talking to a few people who gave me the impression that there was this downhill slope when you have dementia.  Life is still worth living and it is up to us who are “normal” to make it as comfortable as possible for them.

Also Check For:-  Dementia Awareness- A Common Issue of Misunderstanding

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