Carol Lauricella is a full-time carer for her mother Maria, 89, who has advanced dementia. She looks after her every day and night at her Riverwood home. Although there are tough days where the lines of 'mother and child' are somewhat blurred, she wouldn't have it any other way, and it's a typical example of the sacrifice carers make for their loved ones.
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"Mum is one of six or seven, and three of them got dementia. I can tell the difference in her from 12 months ago, or even three months ago. Dealing with the emotional side is consuming, but seeing the decline is the hardest.
"One day she will eat something like pizza and she'll just love it - inhale it, can't get enough. Then you give her the same thing three days later and she will just chew and chew and won't swallow. A week later she will love it again.
"She loves things she shouldn't be eating. But at that age I'm not going to deprive her of food. It's one of the few things she has got to look forward to. She loves pasta. If I could give her that every day it would be so easy. Often I just have to put that first forkful in her mouth and then she will eat.
"She does get frustrated, but she is past the aggressive stage. She makes noises because she'd trying to tell me something, to get my attention. Her shower might be too hot. It can be quite distressing. Sometimes she will grab my hand and lead me somewhere. I've locked doors, had to make the house secure, so she doesn't go and get on a bus or train, and I've had to get rid of trip hazards, take knobs off the stove.
"Mum doesn't go back to the past. She is non-verbal. The way she communicates is by mumbling. But she understands. In her own way, she will help make the bed. I can put a broom in her hand and she can help hang out the clothes. Everything takes longer. Something that should take half an hour, will take an hour and a half.
"My conversations with her are very much about encouragement. If she's colouring in, I'll say 'that's really good, or 'thank you for your help'. Everything is very basic.
"She is on the Commonwealth Home Support Program so that contributes to having services provided such as her lawn cut, gutters cleaned, having minor repairs and home modifications done. But I'm still waiting six months to get her broken windows fixed. There is a lack of government funding to provide funding to these organisations, and despite getting some allowance, I don't think carers are adequately paid.
"I'm struggling myself, having recently had carpal tunnel surgery so I've called in a bit of extra support. I'm not working at the moment. I have to bring mum to everything - all my appointments, my car service, the optometrist, because it's my choice not to put her in a nursing home. I want to keep her at home for a long as possible. It's a sacrifice carers make. We are not being able to go out for dinner, see a movie with friends, go to the beach. I managed to get to the beach twice this year.
"It's hard to get information and support. I'm still finding out things mum can access. Sometimes I draw inspiration from Facebook support groups. But when I hear about people as young as 57 with early onset dementia who have passed away, that makes me think mum has made it this far. I think I'm doing it tough but there is always someone out there doing it tougher. There's no manual, no guide. Every day is like a box of chocolates."
Dementia is an umbrella term for a group of conditions that gradually impair brain function that may affect memory, speech, cognition (thought), personality and behaviour.
It has overtaken coronary heart disease as the leading cause of disease burden among Australians aged 65 and older.
New figures from a report published by the Australian Institute of Health and Welfare's (AIHW), 'Dementia in Australia', showed dementia was responsible for almost 230,000 years of healthy life lost among people aged 65 and over in 2022 - a 61 per cent increase since 2011.
Dementia was responsible for 4.4 per cent of Australia's disease burden in 2022, which includes the effect of living with the condition and dying prematurely, and was the second leading cause of death in Australia in 2020, accounting for 9.6 per cent of all deaths.
In 2022, 401,300 Australians were estimated to be living with dementia. This is expected to more than double to 849,300 in 2058.
"It is an increasing cause of disease burden in Australia, largely due to our ageing population but also from declines in burden from other leading causes, such as coronary heart disease," report spokesperson Melanie Dunford said.
"Non-cognitive symptoms that are common among people living with dementia, including agitation, aggression, insomnia and anxiety, can also have a significant impact on people with dementia, carers and family, and has been associated with early admission to residential care, increased hospitalisation, distress for carers and reduced functional ability for the person with dementia."
Dementia Australia has reinforced the need to ensure people receive appropriate support and care throughout their experience of the disease, and that those diagnosed have dignity and quality of life.
"While we cannot change getting older, genetics or family history, scientific research suggests that changing certain health and lifestyle habits may make a big difference to reducing or delaying your risk of developing dementia," Dementia Australia Chief Executive Maree McCabe said.
Dementia Support Australia Head of Dementia Professional Services Marie Alford said carers also needed more support, with many working unpaid 60 hours or more a week.
"It's important that we provide options for respite for these carers and provide them with necessary skills to continue to provide care at home through programs like DSA's Staying at Home program," she said.
Ms Alford said there needed to be continuing progress on Royal Commission into Aged Care Quality and Safety recommendations relating to dementia, including better palliative care for people living with dementia, dementia-friendly aged care design and more beds offered under the Special Dementia Care Program.
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