By Kath Gannaway
“All dementias end up in the same place.”
There is no cure, there is very little known about the causes, and there is nowhere near enough money being put into research to find the answers, according to Healesville resident Terry Barnett.
Terry’s wife Wendy was 57 when she was diagnosed with Posterior Cortical Atrophy (PCA), a rarer form of dementia, seven years ago.
PCA is an unusual variant of Alzheimer’s disease, starting at the back of the brain where the posterior cortical lobes which process visual function are located.
“The eyes are healthy and see normally, but the brain doesn’t process what the eyes see,” Terry explained.
“The first things you lose are spatial awareness and judgement, and very early on you lose reading and writing function.”
As the disease progresses, it affects other areas of the brain including memory, the symptom most commonly associated with Alzheimers.
“In some ways, this (PCA) is worse because you lose your physical abilities early on; you may go to sit down and miss the chair, pick up a cup and tip it, you can’t pick up a knife and fork, but you retain a greater level of awareness that gives you insight into what the disease is about.
“You know what’s happening in the early stages and that can be an advantage, but it can also be a disadvantage because you are aware of what’s happening.
“That (awareness) can lead to depression, and we’re lucky that Wendy has not experienced that,” Terry said.
The loss of reading and writing function is significant for Wendy who worked as a senior librarian, running libraries at schools in Wangaratta and at Mercy College in Lilydale until the couple took early retirement in 2011 as part of their life plan to make the most of the years ahead.
Wendy’s situation highlights the indiscriminate nature of dementia and the need for research in to what causes dementia diseases, and to find a cure.
With an ageing population, more and more people are diagnosed with Alzheimers and other forms of dementia, but it is not an ‘old person’s disease’, and while a lot is said about lifestyle and keeping your brain active, there are no guarantees.
Wendy led a very healthy life, was highly intelligent, worked her brain all her life.
There is a touching admiration in Terry’s voice when he says she was near the top of her year in New South Wales when she did her VCE and highly regarded for her work as senior librarian.
“She did a lot of alpine walking, ate healthily, kept her brain active; it didn’t stop her getting it,” he says.
Wendy is in the end stage of the disease and for the past year has been in care in Healesville.
During Dementia Awareness Month in September, Alzheimers Victoria’s focus was on elevating awareness of dementia and the impact it has on people living with the disease, and on their carers and families.
The Barnett family’s experience, sadly, is not unusual.
Wendy and Terry have three adult children with partners and four grandchildren with another on the way.
Life as they planned it has been turned on its head.
Wendy was diagnosed in the same year they took early retirement. Terry closed the wine consultancy he had established after their move to the Yarra Valley – something to keep his lifelong involvement in the wine industry alive as they enjoyed their new-found retirement freedom – and cared for Wendy at home for the first six years.
Their eldest daughter moved from Canberra to be close, and their other daughter donated $6000 to PCA research from donations in lieu of wedding gifts.
Apart from all the changes and unfulfilled dreams, nothing can describe the heart-ache of seeing their wife, mum and nanna living with the disease, and dying from it.
The Barnetts have made the most of their time by travelling to Europe in the winter, chasing the sun up, until two years ago and travelling locally as Wendy’s condition worsened.
Raising awareness of PCA, which often goes undiagnosed, and campaigning for increased funding for research is the only way forward, according to Terry who says Alzheimers is where cancer was 30 years ago.
“When I was young, if you heard of someone with cancer, there was no hope; now at least we have hope, and in many cases people can recover,” he said.
“Alzheimers is still a disease of no hope and no development in terms of a cure.
“You see a lot of things in the media, but we’re at least 10 years away of having any chance (of a cure).
“Any drugs we have only treat the symptoms, they don’t cure it, nor do they prevent it, nor do anything for the cause of the disease.
Visit www.fightdementia.org.au for information on dementia, including PCA, and online donation for research.
