“I’ve never felt so vulnerable and incapable. And coincidentally, having looked at him so sick in the hospital and thinking all these years of all of this, the care, and I still can’t stop the end result.” Current carer
“It’s like, how do you, how do you navigate? How do you manage your health? It’s really. You just come, you just come second. I can’t see it any other way.” Current carer
Relationships
Caring for someone with dementia can deeply affect relationships with friends, family, and the person receiving care. Relationships with family and friends can suffer due to the time and energy required to manage caring responsibilities. Many carers experience isolation as their social circles diminish, with friends and even close family members often unable to fully comprehend or support the demands of the caring role. This isolation can be exacerbated by the emotional toll of watching a loved one progress, leading to grief and feelings of loneliness. The constant demands of caring can strain family relationships. Additionally, the emotional connection with the person being cared for may change, as their dementia progresses, creating a complex mix of love, loss, and responsibility.
The National Carer Strategy could focus on increasing access to mental health support services and check-ins for carers, stress management resources, and improving respite care options to promote the health and wellbeing of carers.
“It has had an impact on my relationship with my mum, but also with my husband, because of the time that I was spending with mum and Dad. So, there was that tension between”. Current carer
“My relationships, my social connections all fell away. Nobody wants to talk about dementia. Nobody understands”. Current carer
“My experience was perhaps different from many others here in the. My partner and I were lesbians. We didn’t have any family support whatsoever. And where we had expected that our community would support us, that didn’t happen and that was a shock to me.” Former carer
Accessibility of support and services
When surveying both staff and carers, there was a unanimous consensus on the top two challenges faced by carers of people with dementia being a lack of awareness and limited availability of support services. This response aligns consistently with feedback from previous surveys and focus groups. Both staff and carers have highlighted a critical gap in accessible and adequate services, underscoring the urgent need for improvements in the support system.
Page 8 of 11 © Dementia Australia
Carers report difficulties in accessing timely and appropriate services, such as respite care, assessment processes, and information resources. The bureaucratic hurdles and lengthy wait times for services often exacerbate the challenges faced by carers.
The inadequacy of services for Culturally and Linguistically Diverse (CALD) communities in accessing support and services remains a significant issue, as highlighted by feedback from Dementia Australia’s staff and carers. In a survey to staff, the majority of respondents indicated that services poorly or very poorly meet the needs of CALD communities. Carers from CALD communities expressed that there aren’t culturally appropriate options to suit them. Many highlighted that existing services often fail to consider language barriers, cultural sensitivities, and diverse care preferences, making it difficult for families to access the support they require.
Improvement in culture-appropriate respite, so the family carer is not the only person who can help the person with dementia who has reverted to mother tongue.
Current carer
For carers from culturally diverse backgrounds, the availability of culturally sensitive navigation support can help them access appropriate services and resources more effectively.
Current carer
Carers of individuals with younger onset dementia face significant challenges in accessing appropriate services and support, particularly when managing changed behaviours associated with dementia. Many respite and care services are not tailored to the unique needs of younger individuals with dementia, leaving carers struggling to find suitable options. Additionally, a widespread lack of training among care providers in managing changed behaviours further exacerbates these difficulties, increasing the strain on carers.
Respite
A predominant theme is the lack of available respite options and the difficulty in accessing those that do exist. Carers of people with younger-onset dementia face additional challenges, as there is a shortage of tailored services that meet their specific needs. A widespread lack of understanding about the different types of respite care, their benefits, and how to access them further complicates the process, particularly for overnight respite. Additionally, some providers impose a minimum two-week stay, limiting flexibility for carers who need short-term relief. Cultural and linguistic inclusivity in respite services is also insufficient, and the current number of residential respite beds is inadequate to meet demand. Staffing shortages, particularly in home-based respite care, exacerbate the issue, especially in remote areas, and many care providers lack specialised training in dementia care. Carers express concerns about the safety, quality, and emotional toll of entrusting their loved ones to respite care, especially when dealing with the behavioural changes associated with dementia. Additionally, many carers face resistance from the person with dementia when trying to access respite services. This highlights the urgent need for more dementia-friendly respite options, a well-trained workforce, and streamlined processes to make respite care more accessible and supportive for carers.
Page 9 of 11 © Dementia Australia
“Hard to get spots for respite, even when you can plan ahead, often not told respite available, so cannot plan anything. Also, would be good to be able to know could get respite regularly, make it easier to cope with caring for someone with dementia”. Former carer
“I have only had Respite care twice in 8 years. I would like to be able to forward plan and book a decent break once a year, but this is impossible. On one occasion I booked Respite care which was then cancelled. I had already paid a deposit for a trip away. My deposit was returned as a gesture if kindness”. Former carer
“Not many facilities offer respite unless you are intending on using them eventually on a permanent basis”. Former carer
Specialised peer support
Carers expressed that peer support groups help in providing connection and understanding from others who are going through similar experiences. The emotional benefits of peer support reported by carers include feeling less alone and having a space to share their experiences and challenges. Peer support groups are seen as a valuable resource for emotional well-being, helping carers cope with the stress and isolation that often accompany their roles.
However, despite the benefits of peer support, many carers mentioned that peer support networks are not always easy to find, especially for more specialised groups such as those caring for individuals with younger onset dementia and/or from diverse groups. This lack of access can leave carers feeling isolated and without the necessary emotional and practical support. Additionally, carers in more remote or regional areas expressed difficulty in accessing peer support groups. The lack of local groups can make it difficult to connect with others who understand their situation. Recommendations include the need for more specialised peer support groups, such as those for carers of individuals with younger onset dementia as well as those residing in rural, regional and remote areas.
Recognition of caring role
Overall, the feedback received from our carer surveys and focus groups indicate that there are several gaps and challenges in the recognition of unpaid care, leaving many carers feeling unsupported and undervalued in their role.
Dementia Australia has made a submission to the Inquiry into the recognition of unpaid care which emphasises the need for stronger legislative frameworks to improve the recognition of carers.
“Unpaid carers, are predominately not recognised and very undervalued within their community despite the economic savings they make to different governments.” Current carer
Page 10 of 11 © Dementia Australia
Carers still feel undervalued by governments, employers and the community. Improving community messaging and dementia education can help organisations, employers, and community members have a better understanding of dementia to better support carers.
“Recognition in the workplace and community in general that carers are essential to a civilised community. Any financial assistance offered to carers is not a cost to the budget it is an investment in our community just like building roads is. Carers to be seen as community providers of care and support”. Former carer
“One of the things that I feel is that as a carer that it’s not recognised as a job. It’s the hardest job any person will ever do. It’s the longest hours… but even government departments don’t recognise it as a job.” Current carer
Feelings of recognition were nearly non-existent, with carers expressing that their role is often overlooked. Many carers face significant challenges balancing work, finances and health yet feel invisible to within the systems meant to support them, which highlights the need for stronger acknowledgment within the Strategy.
“Acknowledge the extensive work informal carers undertake and remunerate accordingly. It’s a road to poverty for so many of us and we lose our health along the way.” Current carer
Conclusion
The National Carers Strategy presents an opportunity to influence the way Australia supports its carers, particularly those caring for people living with dementia. By addressing the challenges outlined in this submission the Strategy can lay the foundation for a more effective carer support system.
We welcome the opportunity for further consultation.
Page 11 of 11 © Dementia Australia
Department of Social Services
National Carer Strategy Consultation
Rare Voices Australia Submission
September 2024
About Rare Voices Australia
Rare Voices Australia (RVA) is the national peak body for the estimated two million Australians living with a rare disease.
RVA provides a strong, unified voice to advocate for policy as well as disability, health, and other systems that work for people living with a rare disease. RVA’s work is non-disease-specific and is based on the commonalities of the approximately 7,000 different rare diseases.
Our person-centred focus sees us working with all key stakeholders, including people living with a rare disease, over 100 RVA Partners (rare disease groups/organisations), governments, key peak bodies, researchers, clinicians, and industry.
RVA advocates for the best outcomes for Australians living with a rare disease, and their families and carers.
RVA welcomes the opportunity to provide a Submission to the consultation on the Australian Government’s National Carer Strategy on behalf of the rare disease community.
What Is a Rare Disease?
A disease is rare if it affects fewer than five in every 10,000 people. There are approximately 7,000 different diseases and an estimated two million Australians live with a rare disease. Therefore, while the occurrence of individual rare diseases is uncommon, having a rare disease is in itself relatively common.
Around 80% of rare diseases have a genetic origin and due to the hereditary nature of some rare diseases, multiple people within the same family can be impacted.
Rare diseases are often serious and progressive, exhibiting a high degree of symptom complexity, leading to significant disability, health, and psycho-social challenges.
Most people with a rare disease meet the Australian government’s definition of having a disability, being a “limitation, restriction or impairment, which has lasted, or is likely to last, for at least six months and restricts everyday activities”. This includes the estimated 100,000 NDIS participants with severe to profound rare disease disability impacts.
For key decision-makers at all levels, greater knowledge of rare diseases can facilitate more responsive and appropriate services for people living with a rare disease and their families and carers.
National Strategic Action Plan for Rare Diseases
RVA led the collaborative development of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan)1, the first nationally coordinated effort to address rare diseases in Australia.
The Action Plan is comprised of three core Pillars, with each Pillar outlining priorities, actions, and implementation areas.
The Pillars are:
- Awareness and Education
- Care and Support
- Research and Data.
The three Pillars are interrelated and when considering a policy response to the needs of carers of people living with rare disease, the strongest response addresses priorities across multiple Pillars.
The Action Plan includes the following actions and implementation steps related to the needs of families and carers of people living with rare disease:
Action 1.2.1 Raise awareness among people living with a rare disease, and their families and carers, about the care and support services available to them.
“Increased awareness and education at the individual and community level is vital. It is common for people to have never heard of the rare disease with which they, or their child, are diagnosed. It can be difficult to find a practitioner who is educated about the disease. Yet, people living with a rare disease, and their families and carers, are reliant on services for both care and support.”
— National Strategic Action Plan for Rare Diseases p15
Implementation
1.2.1.1. Develop and maintain an accessible multi-purpose digital repository to detail available care and support services and to provide general rare diseases information. The repository can be used to identify gaps and opportunities for improvement. Promote the repository to rare disease organisations, for distribution to people living with a rare disease, and their families and carers.
1.2.1.2. Build on existing activities of rare disease organisations to raise awareness of care and support services available to people living with a rare disease, and their families and carers. Identify gaps and opportunities for improvement.