A personal account of living with younger onset dementia

‘IT’S the simple things like cracking eggs into a bowl’. An incredible first person account of what it’s like to live with early onset dementia.

IN Still Alice Julianne Moore plays a woman given a devastating diagnosis: Early-onset Alzheimers. It’s a nightmare scenario that is incredibly common in Australia. 25,000 people currently live with younger onset dementia, some of them as young as 30. Di, from Tasmania is one of those people and she’s written this story for news.com.au.

So, you’re asking me what it is like to live with dementia.

People often ask me what my symptoms of dementia are and how they affect my everyday life. In answering them, I might name a few common and very frequent difficulties I have, and the usual response from the person asking me the question is, “Oh, yes, I do that all the time too”.

But the thing is, my ‘all the time’ really means something like 70% of the time, compared with maybe 2% for a person without dementia.

Just think of the number of times you need to use your reading skills for work, information, recreation and pleasure. And then try to imagine reading when there are patches of blurriness, it’s difficult to stay on the line and, worst of all, finding that after considerable effort, you have not retained much of what you’ve just read.

What’s more, there are multiple problems like that, such as not being able to find words, disorientation and the sort of easy problem solving one would normally do without conscious thought like using a mixer, tap or cracking an egg and dropping it into a bowl.

I can tell you that sometimes the egg and the water goes nowhere near the intended location!

Egg being cracked open into bowl 09 Nov 2001. /Eggs

Every person with dementia will have a different set of symptoms, depending on the parts of the brain affected. For me with Posterior Cortical Atrophy, (a variant of Alzheimer’s disease) I am particularly affected by spatial and navigational awareness, which I find very hard to bear because it means I am losing my ability for independent travel and many similar activities.

Here is a little illustration of the way my thinking is going askew.

I was down at the jetty with my husband Mike, preparing to go for a sail in rather blustery but sunny and warm conditions, when Mike’s hat took to the air and then promptly dropped into the sea some way off.

Now Mike’s not very nimble so I knew I’d better rescue it for him pronto and get it back before it sunk; so far, so good.

But then it started going pear-shaped.

I couldn’t see the rowlocks right beside me (bollocks!)

I got in the dinghy back to front too (damn!)

I no sooner got that sorted, headed off and realised I was headed in the wrong direction! By this stage, Mike is bawling “Go the other way”.

I eventually got back on course to retrieve soggy hat (phew!)

I paddled to beside the hat but then I couldn’t work out how to deal with retrieving the hat without losing an oar.

By the time I’d sorted that one, the hat was out of reach again (argh!) so I had to repeat my initial steps.

D3AWHD Tofino Botanical Gardens Vancouver Island British Columbia Canada pond lake rowing boat Alamy positional, fee for high res

At last I had the hat, scooped up on an oar ready to plop it safely into the dinghy at which point, goodness only knows why, I picked up the hat and threw it back in the water!

Amazingly, I did it all again. This time successfully and just as the hat was slipping under the waves. It certainly gave both me and the onlookers a giggle but, in truth that sort of thing is a source of great frustration after the first few ‘stupidities’ of the day.

So how do I cope?

It’s difficult, and sometimes I have days that are much better than others. But I like to confront problems head on, and one thing I did know was that I wanted to find out all I could about the pathology of the disease.

It occupied my mind with something practical to do that wasn’t heavily charged by a maelstrom of negative emotions.

I immerse myself in doing things; continuing my interests as best I can and trying some new ones on the way.

Most helpful is the network of people who have remained constant and the new friends and allies I have made, some who I hardly know, as well as family and friends.

But, then there’s the difficulty of conveying how I feel about the future, bearing in mind the prognosis as it stands at this moment in time.

I’m an ardent supporter for having a change in legislation regarding voluntary euthanasia, personal choice and end of life decisions.

I am constantly aware and insightful in a way that someone considerably older might not be. This makes for a very profound existential distress that is ever present but which could be fixed in a stroke by a change in legislation.

I love being a participant in our world and like most, want to stay with it for as long as possible, but not at any cost, and I’d like to reserve the right to be the arbiter of my leaving it.

Originally published as A personal account of living with younger onset dementia