Ingeborg van Teeseling

About Ingeborg van Teeseling

After migrating from Holland ten years ago and being warned by the Immigration Department against doing her job as a journalist, Ingeborg van Teeseling became a historian instead. She endeavours to explain Australia to migrants new and old at her website www.australia-explained.com.au, and runs www.lifebooks.com.au, telling people's life stories.

The first step of dementia is often misinformation

While dementia is real, the proliferation of misinformation online often magnifies symptoms that may not exist.

 

 

A while back, a friend of mine started to forget things. She is in her early sixties, and she jumped to the scariest conclusion straight away: dementia. Then, to make it worse, she went online to do some research.

Within half an hour she was convinced that not only did she have memory loss, but that horrible things were about to happen. One of the articles, for instance, spoke about hallucinations and trances as part of Alzheimer’s disease, and quoted people seeing ghosts and black holes in their bathroom tiles, while others had spent time in a psychiatric ward for misdiagnosed symptoms.

Not surprisingly, my friend went into a bit of a tailspin. But because she was afraid of a real diagnosis, she kept postponing going to her GP. When she finally did, months after her fear started, she was stressed and depressed. And that had consequences: the memory tests they put her through showed diminished capacity. That, of course, exacerbated the situation, and when she ran into a mutual friend of ours a year later she was at her wit’s end.

Fortunately for her, our mate is a scientist. A real one. And he offered to do some research. Real research. What he found changed her life. First of all, he found that it was highly unlikely that she had any form of dementia. Although the media spend a lot of time highlighting the plight of people with early-onset Alzheimer’s, in reality only one percent of what is called the ‘young old’ (between 55 and 75) gets it.

While 1 in 5 people that age have trouble remembering things. Granted, after the age of 75 you have a much larger chance at dementia: 1 in 10. And 1 in 3 people at that age forget things without having the illness.

 

If you are stressed, or depressed (and who wouldn’t be if they think they’ve got dementia?), that makes it worse still. So, perception makes us sick. And that is a pity, because we are doing much better much longer than we think we are.

 

But even then the public perception doesn’t match the reality. Research shows that most of us are afraid that we will get the disease, and that far too many of us, almost 70%, are even convinced that we will. And like with my friend, that has consequences. Because that is something else that research shows: if you are convinced you are forgetful, you really score worse in tests that examine your memory.

If you are stressed, or depressed (and who wouldn’t be if they think they’ve got dementia?), that makes it worse still. So, perception makes us sick. And that is a pity, because we are doing much better much longer than we think we are.

In Australia, there are 8.3 million people over the age of 65. 2.8 million in what is surprisingly called the Lucky Generation (born before 1946) and 5.7 million Baby Boomers. Together, they comprise 42.5% of the population.

Usually, we put them into the same category: old people. And we’ve got ideas about them that often have very little to do with reality.

That is bad enough, but even more unhelpful is that they themselves suffer from delusions; perceptions that hurt them and the people around them. Dementia is a good example of that. Cognitive health, as it is called, has risen in the last 25 years, especially for women.

This is mostly because we are better educated. Education trains cognition and gives us more brain reserve than we would have had without it. Higher educated people have overcapacity, so if they develop dementia they do that later than people with less education, who’ve got less to lose.

A Dutch longitudinal study, that followed 5,000 55-plus people over 25 years, showed the age that women start to get dementia used to be 72 in 1993. Now that is 82. For men, who were already better educated than women, it has climbed from 76 to 83. Those results are probably very similar for Australia.

There are other misconceptions about the state of play for this large group of people. First of all, it seems to be common knowledge that we are getting older and that the Queen spends more and more time signing birthday greetings to 100-year olds. But that idea needs some finessing. We have only been getting older since the 1950s, and even then it was only women who did so.

Men didn’t start until the 1990s. In the 1950s, the difference between women and men was six months. By the early 1990s, that had grown to 4.5 years. Then women ‘flatlined’, so to speak, and men’s ages increased. From 2002, both have been climbing again.

 


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Now they differ by an average of 2.7 years. Men get to 82, on average, women to 85.

The consequence is that another fear is being neutralised: that of widowhood. Less and less women are losing their spouses. At least, they are not dying on them in great numbers anymore. What is increasing is the group of people that decide to get divorced in later life. Funny that, isn’t it?

Secondly, of course, people are more prone to illness the older they get. But there isn’t one illness whose risk we accurately predict.

A few examples: Heart disease happens to 2 in 10 of the young-old and 3 in 10 their older counterparts. But we think it happens to half of us. Cancer and diabetes: same thing. 1 in 10 and 1.5 in 10 of elderly people are diagnosed with either, but research shows most of us expect to die of cancer (if dementia hasn’t taken us first).

On the other side of the scale is obesity: 9 out of 10 older people doesn’t consider themselves overweight, although they are.

So most of our perceptions are out of sync. And that can be dangerous. It made my friend stressed and depressed and could have convinced her that she had an illness she didn’t have. But it goes further than that. If you are convinced that you’ve got joint or bone problems, you might be tempted to stay at home. If you do that often, you can get isolated from other people. Loneliness can not only make you depressed, it can also make you lose your appetite.

As a consequence 1 in 14 older people who live at home is malnourished. In institutions, it is 1 in 8. If you feel vulnerable in general, research shows your body follows your perceptions.

People who feel vulnerable are twice as likely to fall, break bones or lose the capacity to take care of themselves than people who feel fine. Even though they might score the same when they are measured objectively.

Interestingly enough, though, perception is relatively easily changed. In The Netherlands, they organise courses for people who are afraid of falling.

They get them to move more, but also make sure they broaden their horizons: see more people, do a course, go dancing. After a year, the participants feel much better. They get out more and fall less. And that is interesting, because they are more often in situations where falling would be a real risk (like dancing, or walking, or even running). So again: perception and reality are a long way removed from each other.

The reasons those people give for their improvements are interesting too. Optimism, the ability to put things into perspective, being able to do what they want with their time and the feeling that they are, and have been in the past, useful and productive.

But the most important thing they’ve got in common is that they feel in control: they know who they are and they don’t let themselves get confused by BS information, either online or elsewhere.

That way the stress and depression my friend suffered from will happily pass them by. So I am starting to wonder: which savvy entrepreneur can start a new website? A one-stop-shop that provides old people with the right information about health and related issues. Based on real science, real research instead of scaremongering. 8.3 million visitors guaranteed. Any takers? Imagine how much money you would save the overburdened health sector, and how much suffering you would prevent.

 

 

 

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