Dementia refers to a collection of symptoms caused by disorders affecting the brain - the most common type being Alzheimer’s disease. Trevor Crosby has been living with a form of dementia called the Lewy body disease for about seven years. His memory is deteriorating each day but he’ll never forget the day when he got diagnosed.
“I was absolutely dumbfounded. I was speechless. I had a lump in my throat. I had every emotion in my body that’s impacted by this terrible news and I just thought it was the end of it all.” - Trevor Crosby, living with dementia
Trevor Crosby was running a farm in rural New South Wales, as well as two other businesses. He’s has had to make changes in all aspects of his life to cope with memory loss.
“Because I had a diagnosis of dementia, it meant that my mental ability was going to go downhill…sorry, I’ve just lost my train of thought there. Oh, the changes…that’s right. The changes that we experienced were anything from where we lived; we had to retire our business, down to things like driver’s licenses were under review annually.”
Trevor is one of 413,000 Australians living with dementia. Geetika’s mother was relatively young when she was diagnosed with Alzheimer’s at 63.
“You go through that shock and you go through that absolute anger. If you deal through that, you get to that stage of accepting it: okay, this is what it is; this is what my mum has. Where next? Where now? What do we do? How do we make sure my mum is supported? What support systems are available to us, to mum? That’s when we started getting in touch with Alzheimer’s Australia.”
Geetika’s family participated in the Living with Dementia program run by Alzheimer’s Australia. Through the program, they met eight other families going through a similar journey, some of whom were only in their early 50s.
“There are people 10 years younger than my mum, who are getting this. Listening to people, listening to how they were managing. What the program was really helpful was how do you then go through the journey of dementia? How do you live well with dementia? What’s involved for the carers?”
"The prevalence of dementia doubles every five years after the age of 65. Typically, symptoms such as memory loss, disorientation and repeatedly losing things, start slowly and gradually." - Professor Perminder Sachdev, UNSW
Geetika learnt that as people change through Alzheimer’s, things can get much harder on the primary carer, and that’s Geetika’s father.
“Whilst it was about what support mechanisms were going to be there for my mum, it was also about my dad as well, making sure how he was going to be supported.”
Geetika and the family also had to decide how to share the responsibilities of care and change the strategies as her mother’s situation deteriorates.
“What’s the different roles everyone was going to do? Obviously, not working, my dad was going to be the primary carer, then my brother and my sister-in-law. So everyone starts doing different roles to make sure a support system is set up to make sure that everyone’s supporting, talking, helping. Every week, or every month, there could be a change in mum. What she could do two months ago, she will struggle to do that now. That’s another thing to factor in.”
Professor Perminder Sachdev is the co-director at University of New South Wales’ Centre for Health Brain Ageing. He says the prevalence of dementia doubles every five years after the age of 65. Typically, symptoms such as memory loss, disorientation and repeatedly losing things, start slowly and gradually.
“As it progresses, a number of other aspects become affected: they may have difficulty in language, they may have difficulty in understanding what is being said or written, they may have other problems like recognition of people as it advances, then their personal activities, they may have difficulty managing their personal finances, they might have difficulty in their personal care, looking after hygiene and other personal needs. This happens over several years.”
"Older migrants living with dementia often receive better care at home due to a shortage of culturally appropriate aged care facilities in Australia. While there is no cure for dementia, the years of good functioning in everyday life may be lengthened." - Professor Perminder Sachdev, UNSW
“Firstly, people are coming earlier for diagnosis, and, also, with good care, you can maintain function for several years. Often in some cases, it can even be up to 10 years, but often we say five to six years, even more, that they can continue to function reasonably well before their dementia advances to a degree where they need considerable help for their daily activities.”
As for Trevor Crosby, it’s been nearly three years since the diagnosis and he’s making the most out of life by getting up before sunrise to do yoga, playing his favourite sport, spending quality time with loved ones, and volunteering as a dementia advocate for Alzheimer’s Australia.
“I think really. it’s a case of recognising that you’ve got a problem. You’re not the only person in the world that’s got that problem. There’s a helpline out there that’s manned by very capable people who can push you in the right direction as far as getting you to understand your problems better, get the diagnosis as early as possible. It can improve your life. I’ve proved it. I’m living it. I’m off to play golf this afternoon. I’ve played golf yesterday afternoon.”
If you’d like more information on how to manage life with dementia, you can call the Alzheimer’s Australia helpline on 1800 100 500 or visit their website at fightdementia.org.au/languages
You can also contact the National Dementia Helpline through the Telephone Interpreting Service on 131 450.