Trevor Mast is one of the great names of Australian wine. Quiet but forthright, with a trademark tangle of curly hair and an expert palate, he was renowned as both winemaker and judge.
He pioneered the Grampians as a winemaking area; was among the first to plant Italian varieties and to resurrect shiraz at a time when the fruit was more often going into muffins than bottles.
By the early 1990s his vibrant purple, peppery Mount LangiGhiran cool-climate shiraz was lauded, here and overseas, as the archetypal, essential Australian shiraz. Now he doesn’t even drink the stuff.
About three months ago, Mr Mast lost his taste for wine. It was the latest in a five-year-long series of disconnections from one of the things he loved most. A year or two ago he lost his critical faculties for wine, and about three years before that his mastery of the winemaking process slipped away. He simply forgot how to make it.
It was one of the pieces of Mr Mast that have been stolen by creeping Alzheimer’s disease. At 63, he is one of an estimated 16,000 Australians with younger onset dementia, a type of dementia that emerges before the age of 65 but can affect people in their 40s and even 30s. He was 57 when first diagnosed.
Much less common than dementia occurring in those over 65, younger onset dementia involves similar loss of memory, intellect, rationality, social skills and normal emotional reactions, but often develops more rapidly and is more difficult to diagnose – and, perhaps, to come to terms with.
Sandi Mast first noticed her husband changing about 2004. ”He was outgoing, gregarious, very even-tempered,” she says. ”He was dedicated, he was crazily passionate about making wine. He had a bit of a feminine side, he loved classical music. A great dad.
”He always had so much on his mind and on his plate that it wasn’t unusual for him to lose his keys or forget where he put his jacket, but it all became much more frequent – daily and then multiple times during a day. Then it started affecting his speech patterns, he was simplifying his speech, using the same phrases to describe things that were quite different.”
Six years later she says she doubts Mr Mast has more than 20 words in his vocabulary. He can no longer dress or toilet himself: ”He’s lost interest in the grandchildren, who he just adored. He’s lost the ability to enjoy children. That’s a shocking loss.”
Mrs Mast says she doesn’t feel resentful about the disease, but says it is challenging. ”If you lose someone to a sudden death, they’re gone and you can grieve. But this is an ongoing grieving process, happening little bit by little bit all the time.
”We’ve had a close to perfect marriage so I’m still grateful to have that physical contact and to look after him, and so long as I can, I will.”
But that is one of the challenges of younger onset dementia. There are probably 500 people with the illness in Victoria who need respite or full-time care, but there are no suitable facilities. Invariably, they end up in nursing homes with frail residents often 20 or 30 years older with different physical, medical and emotional needs.
After Garry Lovell’s mother, Janice, was diagnosed at 51, she was moved between 11 nursing homes in 10 years. ”She was a very fit, active mobile lady who just had this awful disease of the mind,” says daughter-in-law, Mandy Lovell. ”They’re not designed for younger people. They found it very difficult, just because of the mismatch of ages, to find activities that would occupy her.”
Janice died in 2001 and Garry and Mandy set up the Lovell Foundation to promote and raise funds for dedicated residential facilities for people with younger onset dementia. These would cater to their physical needs with more space, gardens and possibly gyms and men’s sheds, allow families to be actively involved and even stay over, and have staff with specific training.
They are approaching aged care agencies to promote the concept. In a sense, it has become more personal. Last year, Garry was diagnosed with the condition and already his short-term memory has become compromised. ”But he’s still well enough to have insight about what it’s going to be like and he really worries for me,” says Mrs Lovell.
”We’re trying to mitigate some of that by having some fun, getting out there and living for the now. But the burden really falls on your heart. I don’t want my gorgeous soulmate to get sick, I don’t want him to not be able to live with me any more. I don’t want to get to the point where I feel I can’t care for him myself.”
When Sandi and Trevor Mast heard about the Lovell Foundation they decided to help. When they moved to Melbourne from the Grampians in 2007 their personal cellar contained 300 dozen bottles. They had given about half to family and friends but are now donating most of the rest to the foundation. An auction last year raised $14,000 and another is planned for December this year.
Mr Mast’s friends in the industry have also joined the cause. Gordon Gebbie of the Rathbone Wine Group is seeking wine and donations from the industry and wine lovers for the auction and a fundraising dinner.
”Trevor is an official legend of Australian wine, but what many remember most is his generosity in every sense of the word,” he says. ”This is an opportunity to repay him and so many others like him cut short in their prime by this terrible illness.”