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It feels as though dementia has been part of my life for a very long time. My grandfather passed away in 2013 following a diagnosis of Alzheimer’s disease. Right up until his late eighties he was active, driving and very much doing all the things he had always done. He was 88-years-old when he was diagnosed, and passed away aged 89, following a rapid decline.
In an entirely different set of circumstances, my father-in-law was diagnosed with younger onset dementia in 2014, aged just 63. The first tell-tale signs were lapses in his memory. We might have just returned from taking the dogs for a walk, and before long he would be suggesting it was time to take the dogs out.
These sorts of occurrences went on for about a year before we, as a family, sat down to raise our concerns with him. It wasn’t an easy thing to do. He was difficult to reason with and blamed the problems he was having on us. This all meant he took some serious persuading to seek a diagnosis.
When his dementia was eventually diagnosed, I was astonished by the lack of support offered by the specialist. There was very little explanation about what the diagnosis actually meant, particularly in somebody so young, and there was no advice given on coping strategies. It was as if we were being told things had just stopped. That this was the end.
As a family we were fortunate, as dementia research forms part of my profession, and my partner has worked in aged care. But it concerns me to think about how people without that extra background knowledge might cope. Because, of course, life doesn’t stop with a diagnosis of dementia. There are so many things you can do to continue to live well.
Initially, my father-in-law didn’t want to make any changes or put in place any strategies to help him cope. He was forgetting things at the shops, so he stopped shopping. His driving began to cause problems, so we took over the driving. He was always an avid reader, but he seemed to get less pleasure from reading as time went on. And, as communication became increasingly difficult, he became disengaged with life in general.
Ultimately, we made a conscious effort to be as inclusive as possible, involving him in more decision-making and as many activities as possible. We encouraged him to focus on the things he had always found enjoyable and was still able to do.
So far, he has responded well. He’s gardening a lot, which he loves. He’s also painting, sketching and is focusing on photography. He even joined a bird watching group, meaning he’s now much more socially engaged. And, what’s more, he seems to find great pleasure in sharing all of this with his family and friends.
The biggest lesson we’ve learned is that dementia doesn’t mean everything has to stop. You can still live well, and have lots of fun!
There are even some positives to be found, if you look hard enough. Because of his diagnosis, my father-in-law lives entirely in the present. He’s not remembering the past or caught up with planning for the future. He’s completely in the moment, and as a consequence his appreciation of the world and its natural beauty is amazing.