There is no shame in having a dementia diagnosis

A few months later came the diagnosis of Lewy Body Disease, which was another blow.

“But I became strong. Strong enough to ask the hard questions. ‘How long do I have to live’, and ‘how many quality years’? I didn’t like the answer at all.”

For more than three decades Mr Crosby and his wife ran a farm in rural NSW, along with two other businesses.

He was a fit and active member of society, a member of the local golf club and a long-serving member of a committee that manages water resources in central NSW.

“Up to 2012, at 62 years old, I felt totally indestructible. I was a very constructive thinker then.”

Medication is helping Mr Crosby manage his dementia. “It has put me in a better place than where I was,” he says. “Clearer thinking, better memory retention and better social ability.

His neurologist suggested the early intervention ‘Living with Memory Loss’ program through Alzheimer’s Australia, which Mr Crosby says proved a wise decision.

“We were able to meet other people living with dementia and realise that while we’re all individuals, group interactions can help you learn more and understand your situation better.”

The diagnosis has impacted Mr Crosby in many ways. “I miss the ability to read books. My concentration levels have worsened,” he says.

“There is no getting away from dementia. It is a cruel, ugly killer lurking in the shadows of my life.

“It destroys the very fabric of humanity, the brain. Astoundingly, there is still a lack of understanding in the community of what dementia really is, which is frustrating.”

Mr Crosby calls for more government and industry support and the need for new initiatives in managing the ‘dementia dilemma’, as he calls it.

“In a perfect world, there would be a cure for dementia. It’s not a perfect world. However, making life with dementia more comfortable is very achievable.”

Mr Crosby just missed out on the younger onset dementia key worker program to assist people with dementia under the age of 65, assess their needs and advise on services and support that can assist them.

“This program has been a great success, and will be beneficial to all people diagnosed with dementia and their carers, no matter their age, to help them accommodate the diagnosis in their lives and connect them to support services. I would like to see a key worker for all people living with dementia.

“I believe dementia specific education for all health professionals is essential, if they want to be equipped to manage the increasing numbers of people with dementia coming their way.

“And I hope the new Minister for Aged Care, state governments and local councils will encourage the creation of dementia friendly communities, but also a dementia friendly nation that recognises dementia as the significant health condition it is, the needs of people living with dementia and their families, the importance of people with dementia to remain active in their community and consequently reduce the stigma that is so often associated with the condition.

Mr Crosby says: “there are good things that have come into my life as a result of the diagnosis. It has helped me face reality and seek out the true priorities in life. I'm a better person because of that.

“I make time for my true friends and doing those things that make me happy: spending time with family and friends, golf, yoga, sailing, bridge, keeping fit, eating well, and speaking out about dementia and letting people know there is no shame in having a diagnosis.”

Mr Crosby believes a positive and optimistic attitude can delay the inevitable. At his annual review with his neurologist recently it was found that his Lewy Body Disease had stabilised during the first year of its diagnosis.

“I can’t tell you why this stability has occurred, but this is living evidence that your actions may do something positive to your condition and mindset.

“I obtained the best medical advice and I enjoy life and focus on staying positive. I also strongly believe in the mantra ‘do it and do it now’, don't put off the things you want to do in your life.

Life is an emotional rollercoaster. It has required certain levels of bravery and committed management to ensure the most appropriate direction is maintained. I want to get the most out of my life by focusing on making tomorrow the most enjoyable day of my life.”

Trevor Crosby is a dementia advocate for Alzheimer's Australia NSW.

Find out more about the 'Living with Memory Loss' support program on the Alzheimer's Australia web page for your state.