A dementia diagnosis is never easy to hear but for Victorian woman Anne Fairhall and her husband Geoff, it took years before they would fully understand why Geoff’s behaviour had suddenly changed and what it really meant. Speaking to Starts at 60, Anne explained that Geoff, who is now 80, was 51 when she first noticed behavioural changes in her husband. He also struggled to communicate with words, something that was bizarre given that Geoff had a passion for learning different languages.
“He claimed he didn’t know what I was talking about and he wanted me to talk sense. I couldn’t understand this,” Anne explained.
Geoff was also feeling anxious and a bit down, which health experts at the time simply put down to depression and anxiety. What complicated matters further was Geoff wasn’t experiencing memory loss – which is a common symptom in many types of dementia. Alzheimer’s disease, for example, presents as problems with memory, but Geoff developed out-of-character behaviour, became disinhibited, judgemental and began struggling with his communication.
With Anne by his side, Geoff spoke to doctors, GPs and specialists about his symptoms and it took 14 years before he was formally diagnosed with frontotemporal dementia in 2005 – a type of dementia that is caused by damage to the frontal and temporal lobes of the brain that impact a person’s mood, social behaviour, attention, judgement, planning and self-control.
“The original doctors and specialists we had didn’t treat us with respect in terms of trying to understand how to get a diagnosis,” Anne recalled. “We had a doctor at one stage and Geoff asked the doctor, ‘Am I getting Alzheimer’s?’ and the doctor said, ‘No, you’re too young and you’re not the type’.”
The diagnosis was hard for the couple because Geoff had a high functioning brain, was an academic, he was young and he was diagnosed at a time when people didn’t know much about the different types of dementia and how they present.
“Everyone thought dementia equalled Alzheimer’s,” Anne said. “Even the organisation was called Alzheimer’s Australia at that stage.”
While Alzheimer’s makes up 70 per cent of all dementia cases, there are actually more than 120 different types of dementia such as vascular dementia and Lewy body dementia and these can cause people to develop different symptoms. Anne had been running her own business at the time of Geoff’s diagnosis but became his full-time carer. Due to her own health issues, she made the difficult decision to put Geoff into care eight years ago, but still sees him most days and is very much part of his care plan.
Anne admits that caring full-time for her husband became “difficult” and “stressful” but she learned as much as she could about Geoff’s condition so she could make both of their lives as easy as possible. It also took her some time to accept that her relationship with her husband changed forever after his diagnosis.
“The thing I found very hard at the beginning was my own sensitivity about being embarrassed about the person I loved who was such a dignified gentleman who lost some of his inhibitions. He became quite disinhibited at times,” Anne recalled. “He could be rude or quick with his tongue and he was such a diplomatic gentleman. For me, it was a big embarrassment. It felt like a huge stigma.”
Geoff also felt shame and initially hid his diagnosis from others until he could no longer hide his symptoms. For example, he would go to the local market to buy fruit and vegetables and would come home with very little cash. Anne realised market stall holders were taking advantage of her husband’s condition and were short changing him without him realising.
Younger people would also snigger at Geoff’s odder behaviour on public transport, while others simply weren’t educated enough about what a frontotemporal dementia diagnosis means. There were also positive experiences such as local cafes that were dementia-friendly who welcomed Geoff with open arms.
“It’s hard at the beginning because you go on initially thinking about your partner or mum or dad as the person they’ve always been. When things change, there’s a sense of disbelief and it takes a while to adjust to those changes and not feel angry,” Anne said. “I always thought it was important to focus on what we have, not what we’ve lost.”
Despite everything that’s happened, Anne said her husband is still the same, warm person he always was and while there have been changes to his behaviour, they’ve still managed to live a great life. She explained: “Our experience was there was a huge amount of adjustment, but if you decide you’re going to understand this and do the best you can and be positive about it, there’s a lot of positives as well.”
To overcome the stigma that still surrounds dementia, Anne said more needs to be done to promote the positive aspects of living and caring for someone with dementia, there needs to be better education, more support and more effective ways of communicating.
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