It’s been more than 30 years since Anne Fairhall’s husband Geoff was diagnosed with dementia, so she knows a thing or two about being a carer.
‘You need to treat it as a marathon, not a sprint,’ Anne advises.
‘Even if it only goes on for three years, it'll seem like a very long time and increasingly, with better care and better knowledge, people can live for 20 or more years with dementia.’
Anne has been an active advocate for carers of people living with dementia for many years, leveraging knowledge gleaned from her own experiences with Geoff, who was only 51 when he was diagnosed with younger-onset dementia.
‘It was very hard at the beginning because no one believed he had dementia and I couldn't work it out either really, but he had some very unusual behaviours. They were out of character behaviours,’ Anne says.
‘He was an academic and a senior executive and normally very diplomatic and we'd been together at that stage for over 25 years – we've been a couple for about 60 plus years – and suddenly he became very undiplomatic in public.
‘Carers need to know there's potentially a lot of embarrassment with dementia. Loved ones don't mean to embarrass them, but they can become disinhibited and confused.’
Whilst many carers put off getting a dementia diagnosis, Anne says it is vital to know what you are dealing with so you can research and understand what is going on with your loved one, as well as access care packages to assist with personal support or help around the house.
Finding a supportive psychologist to deal with your own feelings of overwhelm, grief, exhaustion and anger is also invaluable.
‘Just sitting down with someone who can help you think it through and realise you're not going mad. You're actually normal,’ she laughs.
‘At the early stages I had to deal with an enormous amount of grief or feelings of loss. Geoff was a very intelligent person. We had such a vibrant life and we'd done lots of travel. I had a career, he had a career, we had great high achieving kids and then, all of a sudden, at 50 I'm losing the love of my life.
‘Your life changes and you didn't choose it… I struggled with that for a long time. I spent a lot of time in tears. I just seemed to not be able to stop crying.’
Taking care of yourself is vital, Anne says, maintaining your own interests and activities and staying in touch with positive, supportive friends. Like many carers, it was Anne’s own health issues that forced her hand and led to Geoff’s move to an aged care home.
Anne now mentors other carers, helping them deal with issues including embarrassing or rude behaviour and aggression from the person they love, and encouraging them to maintain a sense of humour.
‘It’s not laughing at the person, it’s actually trying to see the ridiculousness of the situation,’ Anne says.
‘Many of the so-called bad behaviours of people with dementia come about from them not actually understanding cognitively what it is you are saying. They're not doing it deliberately to be negative and horrible to you. They're doing it because they can't communicate their needs. Their brain is scrambling things.’
Whilst different types of dementia cause different problems, the one thing they share is the need for simple, slow and clear communication.
‘That messaging doesn't have to be just with words,’ Anne says. ‘Sometimes it’s just holding their hand.’
For more advice from Anne and others, watch the YouTube video: Finding my way: Sharing tips on supporting people living with
Dementia Australia’s team of experts are available for support and information 24/7 on its helpline at 1800 100 500 or visit
Reviewed 04 September 2023