Scott’s story: Living with Alzheimer’s disease

When Scott was 59 years old, he and his wife Jill began noticing some changes in his cognition. Scott was struggling to find the right words in conversations and was having difficulties problem solving and remembering names.

Prior to this Scott had an incredibly successful career as a Human Resources executive, a career which took him all over the world.

“I could fly to Dubai and pick up the 30 names and faces before a Board meeting and walk around the table and know them.”

Initially, Scott ignored the subtle changes as he attributed them to natural signs of ageing. However, Scott and Jill eventually went to see their doctor who referred them to a memory clinic for testing and monitoring. Three years after he first experienced symptoms, Scott was diagnosed with Alzheimer's dementia.

Alzheimer’s disease is a progressive neurological illness that affects the brain function and independence of millions of people worldwide.^1,2 It currently cannot be stopped or prevented and is a growing global health crisis.¹ Alzheimer’s disease is the most common form of dementia contributing to up to 70% of all cases.¹

The early symptoms of Alzheimer’s disease can be subtle, however one of the main symptoms is memory loss.¹ Memory loss is often considered a normal part of ageing, but the early signs of dementia cause some people to experience a greater level of memory loss.³ People experiencing significant memory loss without the loss of other important brain functions, known as mild cognitive impairment (MCI), are three-to-five times more likely to develop dementia, especially Alzheimer’s disease.⁴ Data suggests there are over 328,000 Australians who may be affected by MCI and mild dementia with suspected Alzheimer’s disease,^5* but Alzheimer’s disease can start to develop up to 15-20 years before memory loss symptoms or MCI develop.⁶

Scott lives a healthy and active lifestyle and enjoys spending time with his friends and family, including his dog Bailey, and playing golf at least twice a week; however, he has continued to experience a progression of his initial symptoms.

^*Includes total population with MCI or mild dementia suspected due to Alzheimer’s disease, before any assumptions relating to cognitive screening, referral to specialist, referral for diagnostic testing (as reported in the RAND 2019 report) are applied.

“Most people I come across for the first time would not think that I have too many cognitive issues, mainly because I look physically fit and active.”

“I think that I am also privileged to have a fair bit of cognitive reserve to call on, but I try to explain to people that life is like living with a slow computer with an irreparably damaged hard drive and dial up internet as a brain making it difficult to perform memory, language and executive processing skills.”

Scott struggles with disorientation and has difficulty processing conversations with groups of people so tries to avoid larger social situations with unfamiliar people. Initially, Scott avoided joining in conversations, but since working with his neurologist and speech pathologist, he now has the confidence to speak up.

“Some of my golf buddies used to call me a nick name ten minutes behind as I was always ten minutes behind the conversation, but this has now changed to five minutes behind since I have been under the care of my neurologist and medical professionals.”

Today, more than 55 million people worldwide are living with Alzheimer’s disease and related dementias and these numbers are growing rapidly.² Dementia is anticipated to impact more than 800,000 Australians by 2054.⁷ Every family is at risk of having Alzheimer’s disease affect a loved one.

Scott believes that receiving the diagnosis was a positive thing as it was from there that they could start navigating living with Alzheimer’s disease.

“I was more than a bit shocked that this has happened to us but all we can do now is to make sure we live the best life possible while we can as we know that the condition is going to deteriorate at some stage as dementia is a progressive condition.”

Scott continues to be monitored by his healthcare team at the memory clinic and is also involved in university research and education to improve outcomes for people living with Alzheimer’s disease and provide speech therapy students practical experience with Alzheimer’s disease.

Jill is currently Scott’s primary carer, a role that at times can be challenging and overwhelming.

“It’s complex, because Jill is my wife of 43 years, but I rely on her to do everything now.

“Jill drives and she does all the finances because I can’t balance a cheque book. I used to manage large portfolios of financial records but can’t manage any complex household finances anymore. I am good at tapping the card though – another wine, another whatever.

“I can’t follow a recipe anymore, I can’t write – all that is gone. I am lucky that I can still use a keyboard.

“So, I need Jill and I need the family and I need my support group around now, which is a bit painful. I have gone from being pretty independent to needing a primary support group.”

Despite the challenges of living with Alzheimer’s disease, Scott maintains his positive attitude and believes he leads a good life. He enjoys his work as a Dementia Advocate for Dementia Australia.

“I think that it is important that people living with dementia have some input into future policy and decisions where possible so that we get better outcomes for people living with dementia and their carers.

“I think that it is my role to stay positive and not give up.

“I think you have to be positive. This is a little speed bump. You’ve just got to worry about having fun, which is important. We do things that we want to do and spend time with people that we want to spend time with. We have fun.”