Our journey to end Alzheimer’s devastating impact on community

22/11/21. By Liz Rehfeldt.

Eileen and Kit Leake.

Eileen Leake and her husband Kit celebrated their 44th wedding anniversary in October and are just as devoted to each other as they were when they first met in the Wheatbelt town of Kellerberrin.

Back then, Eileen, the daughter of a schoolteacher and cinema-owner, was a ‘townie’ and Kit was a farmer from a long line of farming families in the area.

After living most of their lives in the country, they moved to Perth 10 years ago but make frequent visits back to Kellerberrin and Bruce Rock where their two daughters, both of whom run farms with their husbands, and grandchildren live.

Kit began noticing Eileen’s memory was deteriorating after recognising signs which he had seen in his own father’s journey with Alzheimer’s disease. He encouraged Eileen to see her GP.

“I went to my doctor and said: ‘I feel like my head is not working properly’,” says Eileen. “My doctor did some memory tests and then sent me to a specialist (gerontologist) who organised a brain scan that showed I had Alzheimer’s disease. I don’t know why I have it because my two sisters don’t have it and neither does my 97-year-old mother.”

Alzheimer’s disease causes a gradual decline in cognitive abilities, often beginning with memory loss, but also leading to disorientation, mood and behaviour changes, and deepening confusion and paranoia.

Kit says a friend of theirs who had lost her husband to Alzheimer’s disease heard about a Curtin University-led Probucol in Alzheimer’s Disease Study (PIA-Study) on a radio program and told Kit and Eileen about it.

The two-year PIA-Study aims to determine whether an available drug, Probucol, is an effective treatment for slowing the decline in memory and thinking skills in people with Alzheimer’s disease. It’s a key component of Curtin’s ambition to develop potential new treatments and shed light on lifestyle changes that may help prevent the disease that makes up for approximately two-thirds of diagnosed dementia cases.

Some estimates suggest that around 300,000 Australians could be living with Alzheimer’s disease today – and that number is only expected to rise as the general population ages in future decades.

“I contacted Curtin University to discuss how Eileen could be involved in the PIA-Study. The researchers viewed her medical records and did some interviews and memory tests,” says Kit.

“We have recently heard that Eileen has been accepted into the study and we are very pleased about that. It is very good to be part of the study, helping science and other people with Alzheimer’s disease in the future.”

Discovering a life-changing treatment

John Curtin Distinguished Professor and Curtin Health Innovation Research Institute (CHIRI) Director, Professor John Mamo, is at the forefront of Alzheimer’s disease research in Australia. It was thanks to him and his team that a likely cause of Alzheimer’s disease was discovered.

According to John, Alzheimer’s disease is characterised by two abnormalities in the brain – amyloid plaques and neurofibrillary tangles. The plaques are abnormal clumps of a protein called ‘beta amyloid’. The tangles are bundles of twisted filaments made up of a protein called ‘tau’. Plaques and tangles stop communication between nerve cells and cause them to die.

Professor John Mamo.

John says he is very excited that his collaborative group of Australian scientists had identified the probable ‘blood-to-brain pathway’ that can lead to Alzheimer’s disease.

“While we previously knew that the hallmark feature of Alzheimer’s disease was the progressive accumulation of toxic protein deposits within the brain called beta amyloid, researchers did not know where the amyloid originated from, or why it deposited in the brain,” says John.

“Our research shows that these toxic protein deposits that form in the brains of people living with Alzheimer’s disease most likely leak into the brain from fat-carrying particles in the blood, called ‘lipoproteins’. This ‘blood-to-brain pathway’ is significant because if we can manage the levels of lipoprotein-amyloid in blood and prevent their leakage into the brain, this opens up potential new treatments to prevent Alzheimer’s disease and slow memory loss.”

Building on previous award-winning research that showed beta amyloid is made outside the brain with lipoproteins, John’s team tested the ground-breaking ‘blood-to-brain pathway’ by genetically engineering mice to produce a human amyloid-only liver that makes lipoproteins.

“As we predicted, the study found that those mice that produced lipoprotein-amyloid in the liver suffered inflammation in the brain, accelerated brain cell death and memory loss,” says John.

“While further studies are now needed, this finding shows the abundance of these toxic protein deposits in the blood could potentially be addressed through a person’s diet and some drugs that could specifically target lipoprotein amyloid, therefore reducing their risk or slowing the progression of Alzheimer’s disease.”

As a result of this research, published in the prestigious journal PLOS Biology, John and a multi-disciplinary team of researchers and clinicians are leading the clinical trial for the PIA-Study, to examine the impact of a potential new treatment on memory and thinking skills in people with Alzheimer’s disease.

Researchers from the Curtin Health Innovation Research Institute (CHIRI).

The PIA-Study has funding from the Australian Government’s Medical Research Future Fund 2020 ($1.72 million), with additional funding from the Multiple Sclerosis Society of Western Australia (MSWA) and the McCusker Charitable Foundation. It will focus on potential treatment using the drug Probucol.

“Our studies show that Probucol appears to reduce the blood vessel exposure to the lipoprotein-amyloid by inhibiting its secretion into blood. Inflammation in the brain is prevented and brain cells are spared, supporting cognition and memory,” says John.

Interestingly, Probucol was previously used as a cholesterol-lowering drug before statins became the drug of choice to treat high cholesterol in patients in Australia. However, John says the effects of Probucol in treating risk for Alzheimer’s disease are independent of cholesterol lowering.

The main goals of the PIA-Study clinical trial are to build on the findings in preclinical models and to determine whether Probucol is effective for slowing the decline in memory and thinking skills in people with Alzheimer’s disease.

The clinical trial is being run at the Australian Alzheimer’s Research Foundation (AARF) Clinical Trials Division and is sponsored by Curtin University. John hopes to recruit 300 participants in WA and possibly expand the research to other states.

Participants will receive memory assessments, physical and neurological examinations and tests, and will be invited to have MRI and PET scans. Some will be given Probucol while others will receive a placebo drug.

John says the findings could have a hugely significant global impact for the millions of people living with Alzheimer’s disease, and that he is very proud to be part of the team working on this research.

“It is a privilege to work with such a stellar team exploring this exciting line of research enquiry,” says John.

Professor John Mamo in the CHIRI lab.

Dementia care leader collaborates with Curtin

Another key advocate and leader working to improve the quality of life of people living with Alzheimer’s disease and other forms of dementia is Curtin graduate and Brightwater Care Group Chief Executive Officer Jennifer Lawrence (BApplied Science – Medical Technology, 1979).

“In my role I do a lot of advising and helping people to navigate and access the support and care available,” says Jennifer. “I often see people struggling at home to care for their family member with dementia, whether that be a partner, parent or other family member. Sometimes they struggle over many years and often they don’t know where to get help.

“Getting a medical diagnosis and being proactive with medical support is essential, but there is also a definite need for education and support in the community before a diagnosis is made so people can recognise the signs to look out for and know how to get the support they need.

“This can be especially difficult for people with early onset dementia, as our care systems in Australia are not well set up for younger people in their 40s and 50s. There is a great opportunity for disability providers to establish services for people with early dementia.”

Jennifer has worked at Brightwater for 18 years, initially as Director of Care Services and then as CEO for the past five years. She established the Brightwater Research Centre, which prioritises research into brain health, ageing well, brain injury rehabilitation, independence, dementia care, quality of life, Huntington’s Disease and nutrition.

Jennifer Lawrence (second from left) with Brightwater residents.

“It is very important to slow down the rate of cognitive decline in people with Alzheimer’s disease and there is a lot of research happening to achieve that, including Curtin’s PIA-Study,” says Jennifer.

Brightwater was chosen by the Australian Government to pilot the Specialist Dementia Care Program (SDCP) which provides person-centred care by qualified staff for people living with dementia.

Jennifer says Brightwater’s connections with Curtin University remain strong, with research partnerships spanning more than 10 years.

“We funded the Lyn Beazley–Brightwater Scholarship that was awarded to a young Occupational Therapy student at Curtin who is doing their PhD on brain injury,” she says. “We also have a strong connection with all the Allied Health departments at Curtin where students can complete their practicums with us.”

As the baby boom generation moves into older age and people are living longer, Jennifer says now is the perfect time for government, researchers and care providers to ‘lean into’ the need to do more to support people with Alzheimer’s disease and other dementias, and to reduce their impact on people’s lives.

“Dementia, including Alzheimer’s disease, is the leading cause of death of women and the second leading cause of death of all Australians,” she says. “With this in mind, we need to ask: ‘How do we support baby boomers as they age?’ The focus should not only be on lifestyle but also on medication and how it can stem disease progression.

“I’m passionate about this area of work and the real opportunities for discovering more ways to rewire people’s neural pathways for as long as possible so they can live fulfilling lives.”

Jennifer Lawrence celebrating with Brightwater resident, Joan, for her 100th birthday in September 2021.

Finding hope in the dark

Living a fulfilling life is what Eileen and Kit are planning on doing and both are really pleased that Eileen can take part in the PIA-Study and help others experiencing Alzheimer’s disease.

“Life has certainly changed and there have been some difficult times as a lot of old friends have disappeared from our lives. I think this is because they don’t know how to deal with Eileen’s diagnosis,” says Kit.

“But we have made some good new friends who do understand the disease and the changes to Eileen’s personality. Eileen is managing pretty well and we have our routines. She goes for walks with the dog and still cooks and runs the house.”

Kit recently took part in a City of Melville video to raise awareness of the difficulties that people with Alzheimer’s disease and other forms of dementia face in everyday life. He heard about the initiative through his involvement with the Melville Theatre Company.

At times, Eileen finds her condition annoying, frustrating and embarrassing; however, she is not angry about it.

“I used to work as a hospital receptionist and secretary and was treasurer of the Catholic Women’s League, but now I don’t work,” she says. “I don’t take part in conversations very well now, especially in big groups of people. I used to remember people’s names and now I can’t remember them.

“If I run into you in the shops, I’m sorry I probably won’t remember your name, but if you just say hello and tell me your name, I’ll remember you.”

Eileen and Kit plan to keep doing what they enjoy for as long as possible, which includes raising funds for the Kids with Cancer Support Group through their involvement with the Mill Point Rotary Club.

Eileen and Kit Leake.

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