Regional carers navigate Huntington's disease challenges amidst national support shortages
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The challenges faced by regional carers in Australia are often overlooked, but for those dealing with the complexities of Huntington's disease (HD), the situation is particularly dire.
HD is a devastating genetic disorder that combines the symptoms of motor neurone disease, Parkinson's, and Alzheimer's, leading to a progressive decline in a person's physical and mental abilities.
This relentless disease not only affects those diagnosed but also places an immense burden on their carers, who frequently find themselves on the brink of ‘stress and exhaustion’.
Natalia Rossiter, a resident of Orange in Central West NSW, is one such carer who has been looking after her husband, who is affected by HD, for six years.
The toll it has taken on her is evident as she grapples with the relentless demands of the disease.
‘Because of the mental aspects of this condition, it is like someone with dementia and Alzheimer's,’ Ms Rossiter explained.
‘Their ability to emotionally connect with someone, their ability to reason, goes away.’
![compressed-shutterstock_2233018821.jpeg compressed-shutterstock_2233018821.jpeg](https://seniorsdiscountclub.com.au/data/attachments/48/48698-9faac595c7f5aac2979d8cbbee4d633b.jpg)
HD typically manifests when patients are in their 30s to 50s, and as the nerve cells in the brain deteriorate over time, there is no escaping the reality that there is currently no cure or treatment.
The genetic nature of the disease means that there is a 50 per cent chance of it being passed down to the next generation, adding an extra layer of concern for families.
In Australia, specialist care for HD is scarce and predominantly located in capital cities, with each unit only having a few professionals trained to manage the disease.
This presents a significant challenge for regional families like the Rossiters, who are often left without access to the necessary psychological support from such health professionals.
‘I can pay for a private psychologist but it is very expensive and they have little to no knowledge or understanding of Huntington's and what it is and what it means to a family or carer,’ Ms Rossiter lamented.
The fear of having the ‘inability to cope’ led Ms Rossiter to consider moving her husband to an aged-care facility due to the immense level of assistance required for his condition—a decision that no doubt weighs heavily on her heart.
She believes that government support to increase the number of HD-trained psychologists would be a significant step in helping her and others like her manage the daily struggles they face.
‘I deal with Huntington's every hour of every day, it doesn't go away at any time, I cannot leave it at home,’ Ms Rossiter shared.
‘To have support, someone to talk to who understands what I am going through, would be invaluable.’
The issue is a national one, with approximately 2,600 Australians living with HD and another 9,000 at risk.
Lenni Duffield, the Chief Executive of Huntington's Australia, emphasised the hereditary nature of the illness and the profound impact it has on carers, who often find themselves in a cycle of caring for multiple family members over time.
‘It is not uncommon for children to care for their parents before they develop symptoms themselves, or a parent to care for a partner and then for a child,’ she said.
‘It is such a chronic and widespread role of care in families. It deepens isolation, there are feelings of loss, guilt, anger, burden and helplessness.’
Ms Duffield highlighted the widespread absence of assistance for caregivers, particularly evident in regional parts of Australia.
‘Access to counselling and other services is a national issue and that is regardless of location…but the inequalities are certainly felt in regional and remote areas,’ she explained.
To combat this isolation, HD-affected families in Central West NSW took matters into their own hands by organising peer support sessions and discussing their experiences.
Rachael Brooking, the founder of HD Awareness Orange & Central West, facilitated the first meetings six years ago.
‘Unless you have lived experience with the situation it is very hard to relate,’ she pointed out.
‘Being able to be in contact with families that have experience with HD is a really great comfort.’
‘We have made some great connections,’ Ms Brooking added.
For Ms Rossiter, these gatherings offer rare opportunities to converse with individuals who comprehend the challenges she faces.
‘We have had coffee and a chat and shared our stories, provided understanding and support to each other,’ she said.
‘That is the way we survive really, where we get our support.’
As discussions surrounding the challenges faced by carers of individuals with Huntington's disease continue to unfold, attention is drawn to the broader landscape of healthcare and support services for ageing populations.
In regional Australia, where access to specialised care can be limited, caregivers like Ms Rossiter navigate the complexities of providing assistance to loved ones with neurodegenerative conditions.
However, amidst these struggles, there are also stories of hope and resilience emerging within the healthcare sector.
Across the globe, patients seek out countries renowned for their exceptional dementia care, recognising the importance of quality support for those living with cognitive decline.
This juxtaposition highlights the ongoing efforts to improve care standards for seniors and individuals with complex medical needs, both locally and internationally.
Have you or someone you know been affected by Huntington's disease? How do you think we can better support regional carers facing such overwhelming challenges? We invite you to share your stories and suggestions in the comments below.
HD is a devastating genetic disorder that combines the symptoms of motor neurone disease, Parkinson's, and Alzheimer's, leading to a progressive decline in a person's physical and mental abilities.
This relentless disease not only affects those diagnosed but also places an immense burden on their carers, who frequently find themselves on the brink of ‘stress and exhaustion’.
Natalia Rossiter, a resident of Orange in Central West NSW, is one such carer who has been looking after her husband, who is affected by HD, for six years.
The toll it has taken on her is evident as she grapples with the relentless demands of the disease.
‘Because of the mental aspects of this condition, it is like someone with dementia and Alzheimer's,’ Ms Rossiter explained.
‘Their ability to emotionally connect with someone, their ability to reason, goes away.’
![compressed-shutterstock_2233018821.jpeg compressed-shutterstock_2233018821.jpeg](https://seniorsdiscountclub.com.au/data/attachments/48/48698-9faac595c7f5aac2979d8cbbee4d633b.jpg)
Natalia Rossiter emphasised the challenge of accessing specialised psychological aid for HD-affected families in regional areas. Credits: Shutterstock
HD typically manifests when patients are in their 30s to 50s, and as the nerve cells in the brain deteriorate over time, there is no escaping the reality that there is currently no cure or treatment.
The genetic nature of the disease means that there is a 50 per cent chance of it being passed down to the next generation, adding an extra layer of concern for families.
In Australia, specialist care for HD is scarce and predominantly located in capital cities, with each unit only having a few professionals trained to manage the disease.
This presents a significant challenge for regional families like the Rossiters, who are often left without access to the necessary psychological support from such health professionals.
‘I can pay for a private psychologist but it is very expensive and they have little to no knowledge or understanding of Huntington's and what it is and what it means to a family or carer,’ Ms Rossiter lamented.
The fear of having the ‘inability to cope’ led Ms Rossiter to consider moving her husband to an aged-care facility due to the immense level of assistance required for his condition—a decision that no doubt weighs heavily on her heart.
She believes that government support to increase the number of HD-trained psychologists would be a significant step in helping her and others like her manage the daily struggles they face.
‘I deal with Huntington's every hour of every day, it doesn't go away at any time, I cannot leave it at home,’ Ms Rossiter shared.
‘To have support, someone to talk to who understands what I am going through, would be invaluable.’
The issue is a national one, with approximately 2,600 Australians living with HD and another 9,000 at risk.
Lenni Duffield, the Chief Executive of Huntington's Australia, emphasised the hereditary nature of the illness and the profound impact it has on carers, who often find themselves in a cycle of caring for multiple family members over time.
‘It is not uncommon for children to care for their parents before they develop symptoms themselves, or a parent to care for a partner and then for a child,’ she said.
‘It is such a chronic and widespread role of care in families. It deepens isolation, there are feelings of loss, guilt, anger, burden and helplessness.’
Ms Duffield highlighted the widespread absence of assistance for caregivers, particularly evident in regional parts of Australia.
‘Access to counselling and other services is a national issue and that is regardless of location…but the inequalities are certainly felt in regional and remote areas,’ she explained.
To combat this isolation, HD-affected families in Central West NSW took matters into their own hands by organising peer support sessions and discussing their experiences.
Rachael Brooking, the founder of HD Awareness Orange & Central West, facilitated the first meetings six years ago.
‘Unless you have lived experience with the situation it is very hard to relate,’ she pointed out.
‘Being able to be in contact with families that have experience with HD is a really great comfort.’
‘We have made some great connections,’ Ms Brooking added.
For Ms Rossiter, these gatherings offer rare opportunities to converse with individuals who comprehend the challenges she faces.
‘We have had coffee and a chat and shared our stories, provided understanding and support to each other,’ she said.
‘That is the way we survive really, where we get our support.’
As discussions surrounding the challenges faced by carers of individuals with Huntington's disease continue to unfold, attention is drawn to the broader landscape of healthcare and support services for ageing populations.
In regional Australia, where access to specialised care can be limited, caregivers like Ms Rossiter navigate the complexities of providing assistance to loved ones with neurodegenerative conditions.
However, amidst these struggles, there are also stories of hope and resilience emerging within the healthcare sector.
Across the globe, patients seek out countries renowned for their exceptional dementia care, recognising the importance of quality support for those living with cognitive decline.
This juxtaposition highlights the ongoing efforts to improve care standards for seniors and individuals with complex medical needs, both locally and internationally.
Key Takeaways
- Huntington's disease (HD) is described as similar to having motor neurone disease, Parkinson's, and Alzheimer's simultaneously, causing immense stress and exhaustion for carers.
- Natalia Rossiter, who cares for her HD-affected husband in Central West NSW, highlighted the difficulty in accessing specialised psychological support for families dealing with HD outside of capital cities.
- There is no cure for HD, which affects approximately 2,600 people in Australia, with a further 9,000 at risk, and support is particularly needed in regional and remote areas.
- Families and carers affected by HD in Central West NSW created peer support sessions to share their experiences and provide mutual understanding and support.