Findings of NSW 2020 Carer Survey, caring impact, fact sheets for rural, Aboriginal, CALD, young and working carers, carer stress, carer skills program, young carers, ending caregiving (former carers), and placing a person into residential aged care
This page has three sections:
Background Material that provides the context for the topic
A suggested Practice Approach
A list of Supporting Material / References
Carers NSW 2020 Carer Survey
The 2020 National Carer Survey received a total of 7,735 valid responses from carers in every state and territory of Australia, with particularly high response rates among carers in South Australia, New South Wales, Victoria and Tasmania. Most respondents (93.2%) were primary carers, those individuals providing the most support to the person(s) they care for. More females (81.7%) than males (17.7%) responded to the Survey, reflecting the larger proportion of primary carers in the overall population who are female. The mean age of respondents was 58.3 years.
Respondents were most likely to care for their child, including adult children (45.1%), and/or partner (37.0%) and one in four respondents (25.9%) cared for more than one person. The most common group of people being cared for by survey respondents were people with physical disability (36.1%), followed by people with a chronic condition (29.2%) and people living with a mental illness (26.4%).
This sample cannot be considered representative of the broader Australian carer population of 2.65 million, which limits the generalisability of the findings presented. However, a wide range of caring experiences were evident across the sample.
The typical respondent was a female primary carer of working age with a high school education, not participating in paid employment.
The typical person being cared for was an adult son with physical disability who is not able to be left alone for more than a few hours.
Most respondents provided 40 or more hours of care per week, and more than half had been caring for 20 years or more.
Nearly half of the carers who responded were experiencing high or very high psychological distress, and one in three felt highly socially isolated.
Financial hardship was concerningly high, and may have been affected by the economic fallout from COVID-19.
One in three respondents said they never get time out from their caring responsibilities, with only around half having enough time to keep on top of other responsibilities.
It was relatively uncommon for carers to be asked about their own needs when accessing services or on behalf of the person they care for, and services were much less likely to meet carers’ needs than the needs of the people being cared for.
The most common challenges carers experienced when accessing services were getting information about what services are available, and the time and energy it took to organise services. Waiting periods to access services were also a common challenge.
One in four carers reported spending more money than they made in the past 12 months.
Exiting employment and reducing working hours were common impacts of caring on carers’ career trajectories. The uptake of flexible work arrangements to balance paid work and care was relatively high.
Carer’s sense of being recognised and valued by governments is relative low.
A series of cohort-specific fact sheets based on the 2020 survey is available for download:
The ‘Caring Journey’
Carers often go through different stages when caring for someone. However everyone’s caring journey is different and not everyone goes through every stage. The stages are
Noticing changes in a family member or close friend
Confirmation via a diagnosis from a health professional along with directions about treatment and care
Surviving commences as the carer starts a routine of treatment and care
Managing is reached when the carer has set up a routine and organised support; emergencies may happen that take the carer back to the surviving stage
Thriving is reached when routines are in place and emergencies can be managed; as well the carer has discovered how to care for him or herself and manage stress.
Life after caring commences when the caring comes to an end: the person recovers, dies, leaves care or other people take the caring role. Dealing with grief may be necessary at this point (Carer Gateway, 2022).
Impact of Caregiving on Carers
The motivation to care for another person can impact on carer wellbeing. Caregiving out of love can lead to a more positive caring experience. Caregiving because of a sense of obligation, duty, guilt, “no option”, social or cultural expectations tends to lead to less positive outcomes
Direct care costs (hospitalisation, GPs, specialists, medications, carers)
Loss of hours of work
Carers Australia (2022) has submitted a report to the Australian government arguing for an increase in financial support for carers. Key findings of the report and addressing the income issue for carers follow.
The younger a person becomes a primary carer the greater the impact caring will have on both their superannuation balance at age 67, and their lifetime earnings to age 67.
The level of a person’s income before they become a carer is also significant – not surprisingly, the higher paid a person is before they become a primary carer the larger the impact that caring will have on their superannuation balances at age 67 and lifetime incomes to age 67.
For every year someone is a primary carer, on average they will lose $17,700 in super and $39,600 in lifetime earnings.
Some people who care for extended periods of time will lose substantially more, with the most affected 10% losing at least $940,000 in lifetime income, and $444,500 in retirement savings.
Income support through the Carer Payment equals to only 28% of weekly ordinary time earnings for singles in Australia and only 21% of weekly ordinary time earnings for couples in Australia.
Income support through the Carer Allowance equals only 10% of the basic aged care pension for a couple, 6% of the basic care subsidy for a person in an approved aged care home, and 1.5% of the average amount payable to a person with disability in shared accommodation.
Addressing this income issue:
The Government should pay the Superannuation Guarantee Contributions on the Carer Payment.
The Government should increase the Carer Allowance by 150% for those in receipt of the Carer Allowance but not the Carer Payment or increase the Carer Allowance by 475% for those who are in receipt of both the Carer Payment and the Carer Allowance.
Both of these measures would increase the numbers of carers and reduce the reliance of some on paid, government-subsidised care.That is, economic modelling has demonstrated the proposed increase in government expenditure by implementing the above would be offset by savings in paid care services and Age Pension costs.
Reduced levels of participation in the community by carers
Stigma of diagnosis
Change in relationship status: partner to carer, adult child to carer for parents, breadwinner to care recipient or care giver
Lifestyle change: plans for retirement together, loss of income, younger-onset dementia—children, mortgage
Social isolation—sacrifice of leisure pursuits, restricting time with friends and family, reduction of employment
Loss of work hours associated with higher carer strain
Appraisal of burden of care by carer may lead to carer strain (e.g. depression and anxiety)
Carers are at risk of health problems, e.g. psychological distress, hypertension, cardiovascular, poor immune response, slower healing, chronic conditions, decrease in preventative behaviours
Feeling wearing or lacking in energy
Feeling worried or depressed
Feeling angry or resentful
A Note about Young Carers (from Carers NSW: young carer research project, 2020)
Young carers are children and young people aged 25 years and under who provide unpaid care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Young carers can be, but are not always, the main provider of support (the primary carer). A number of findings from the 2020 survey of young carers are relevant to social work.
There are approximately 83,700 young carers in NSW including approximately 20,600 Aboriginal and/or Torres Strait Islander young carers.
Young carers perform a variety of tasks, e.g., housework, shopping, paying bills, looking after siblings, driving or going to appointments, personal care, emotional support and translating for a family member.
They often juggle study, work, and community activities such as volunteering or sport. Being organised assists with this. Caring becomes a normal part of their lives
Many do not identify as carers and so do not access services.
Young carers are often excluded by health professionals and service providers from discussions about the person for whom they care.
Many young carers are reluctant to disclose their caring responsibilities to others. They keep their caring role separate from other aspects of their life.
Young carers gain valuable life skills that can be transferred to other life areas, including employment.
A further study (Addo et al., 2021) examined the effects of the caring role on young carers and if, how and where they seek support. The study’s findings and suggestions for social workers include:
Effects of the caring role
Early maturity and development of important life skills, such as advocacy, resilience, patience, empathy, organisational skills, planning skills, time management skills, and confidence in public speaking
Development of self-efficacy and formation of stronger familial bonds with care recipient
Effects on performance at school and work: missing school or work, withdrawing from group work, lateness, lack of concentration, burnout, mental distress
Effects on socialisation: little to no time to socialise with friends, making time to socialise with friends using self-management and organisational skills
Support-seeking behaviour of young carers
Low utilisation of community-based formal support services
Factors associated with support-seeking behaviour:
Fear of stigmatisation
A lack of adequate age, cultural, stage, and condition-specific carer support
Attitudes of service providers
Not youth-friendly service settings
Lack of awareness of carer status or support opportunities
Implications for social work practices
While social workers provide person-centred services to care recipients, it is also important to consider the needs of the young people in the lives of care recipients who may be providing care, as young carers face significant challenges in balancing their livelihoods and caring responsibilities and are underutilising professional support services. Findings from this study illustrate some challenging areas for young carers in education, employment, and socialisation that need support. Failure to support young carers will further aggravate the negative consequences of providing care in the long term.
Social workers should consider referring young carers to support programs such as the Carers NSW Young Carers Program, which provides information, resouces, and support for young carers and the professionals who work with them.
Social work services should consider using a holistic family-oriented approach to address the needs of both care recipients and young carers
Given that many young carers show early maturity and self-efficacy, social workers and other professionals can use a strength-based approach in working with such young people. They should recognise and acknowledge the young person’s strengths and avoid seeing them as vulnerable and needing help. Strengthening young carers’ decision making and coping abilities is important. Exploring the pros and cons of adopting a ‘young carer’ identity may be useful.
A Model of Carer Stress
Stress develops when factors that mediate stress development (internal coping mechanisms and social support) are outweighed by contributing factors (carer background, primary and secondary stressors). The outcomes can be depression, anxiety, irritability, cognitive disturbance, deterioration in physical health and relinquishing of role.
Key message While carers report positive aspects of caring, such as companionship, fulfilment, enjoyment and satisfaction, there is also strong evidence of the negative effects on emotional and psychological health, such as depression, anxiety, burden, anger, resentment, worry, sleep interruptions and suicidal thoughts. Caring can also lead to social isolation, loneliness, loss of social relationships and lack of support, and the experience of stigma. The impact of caring can increase over time and have greater effects for specific groups of carers.
Despite the number of support programs available for carers, the evidence about effectiveness of these programs is inconclusive, and that it is not possible to say definitively what works to support carers’ social and emotional wellbeing. The person’s age, gender, culture, relationships, educational level, health status, etc. are central to the support required. Their understanding of what being a carer involves is important. So too is their understanding of the health condition impacting on the receiver of their care. There is a complex interplay of many factors in caregiving. Therefore, it is important to have conversations with carers that enable them to reflect about what they need and want, with a focus on person–centred approaches. Just as every person with dementia is unique, so too are carers; so there is no one way to support carers.
The Zarit Burden Interview form may help carers identify their feelings about caring and their level of burden: https://dementiapathways.ie/_filecache/edd/c3c/89-zarit_burden_interview.pdf
The Clinical Practice Guidelines suggest the following approaches.
Respect, listen to and include the carer and care recipient in planning and decision making. Know the person well, look out for their best interests. Maintain autonomy and tailor supports to meed needs.
Monitor carer health: Carers are at an increased risk of poor health and should be assessed regularly. Family needs should also be considered, especially when care recipient has entered a RACF.
Provide respite appropriate to carer needs: Respite depends on the needs of care recipient and carer, services available, frequency, length of time accessed. Uptake of using respite is low. Carers have many reasons for not using respite services: stigma, available hours, stranger in the house. Service needs to be based on ‘respect, listen and include’.
Provide access to suitable program, programs that involve the care recipient if possible: Need to tailor programs to the carer and/or care recipient. Multiple session should be held. Info on nature, services, opportunity for referrals, skill development, communication techniques, problem solving, developing pleasant activities, ways to manage carers own wellbeing. In Australia we have Dementia Australia. Their programs do make a difference to those who participate. A Keyworker program is available for people with dementia who are under 65.
Inform carer and care recipient about suitable support groups: Need to inform carers about accessing support groups, if that’s what the carer wants. This can overcome social isolation, letting people know they’re not on their own. But consider the individual and types of groups available, e.g. culture may impact, language preferences, LGBTI people. Need to listen to and respond to carer needs.
Provide resilience training, overall fitness training and psychological therapy if required: Need to help carers develop resilience and fitness to continue in the role. Each of the other areas contributes to this. Carers and family should be offered therapy if required.
Recently Carers NSW Australia released Caring Through Crisis: COVID-19 Handbook. The handbook provides general information on staying safe, and taking care of carer's physical and mental health.
Recently the NSW Government released its NSW Carers Strategy 2020-2030 with four priority areas:
Carers have better access to information, services and supports
Carers will be recognised, respected and empowered
Carers have improved financial wellbeing and economic opportunities
Carers have better health and wellbeing.
An action plan for 2020-2022 accompanies this document.
In addition to this document, eight factsheets outlining carers rights were published in October 2020.
What rights do carers have?
Accessing aged care services
Accessing disability ervices
Accessing health services
Accessing mental health services
Receiving a Centrelink payment
Your rights t work
Problems with finances
Problem solving, task-centred and solution-focused models may be relevant when working with carers; or simply an attentive, empathetic ear to listen, support, and normalise the situation if relevant.
In 2022 AIFS and Murawin combined to identify strategies to better support carers of children (Smart et al., 2022). Some of the points that emerged that may guide a social work response to carers include the following.
Ensuring carers have all relevant information that they require about the child prior to placement commencing.
Including carers in decision making about the child
Support for kinship carers within three to six months of the placement starting
Supporting carers in keeping kids connected with birth families, community, culture and Country
Having extended families lead decision making when a child can no longer live with their birth parents, especially for First Nations families
More understanding of trauma and use of trauma-informed approaches to supporting children and carers
Caseworkers and carers having a trusting and supportive relationship, and caseworkers having ongoing cultural training
More peer support networks for carers
Having First Nations Controlled Organisations make more decisions about First Nations kids in care, and provide more services for carers
More cultural support for carers of First Nations children
More investment in looking for family members who could be carers, especially for First Nations children
More access to respite care, and respite carers who can build a relationship with a child and a carer over time
Training for carers that changes over time to match the needs of the child and the carer
Having more information about what support is available and how carers can access support
Aged Care Royal Commission
In 2021 Carers Australia produced a response to the recommendations of the Aged Care Royal Commission. This response highlights many of the issues faced by carers of older people, issues that social workers should be aware of and may need to address when supporting these carers. ABS data suggests carers of the aged make an unpaid contribution of around $25 million to the economy annually. Carers Australia point out that, in spite of this, this group of carers have received poorly focused and funded support. The Royal Commission proposed the following changes to assist carers of the aged. The Federal Government has committed to implementing these changes over the next few years.
Primary carers should be involved in the assessment of the person for whom they care.
Carers should be assessed in their own right to identify their needs, and this should lead to referral to carer supports and services.
Respite, that is hard to get and, when it is available, is often unresponsive to the needs and circumstances of carers, should be redesigned so it is offered in a number of formats: over a number of weeks, by regular short breaks over a shorter number of days and nights, and via respite day services.
A dementia support pathway should be established for the informal carers and families of people living with dementia, providing education, peer support and planning for independent living.
Leave from paid work to carry out caring duties should be additional to a carer’s sick leave allocation. [A recent study from the USA found that paid family leave laws were associated with a higher probability of providing family caregiving, higher labour attachment, and less probability of working part-time voluntarily. Although the study found some evidence of a reduction in work hours in some cases, there was little evidence of an adverse impact on wages and earnings. The paid family leaves also reduced reliance on social welfare benefits, which suggests better economic security and the potential to improve retirement security among caregivers (Dao, 2021)]
Timely provision of Home Care Packages is essential to avoid carers having to give up employment and compromise their own health and wellbeing to care for loved ones.
Benchmarking of aged care providers offer an informed choice to older people and carers.
Ensuring people with a disability who move to aged care continue to receive the support they were receiving under the NDIS (not the case at present – services cease) will mean carers have an improved capacity to preserve their own physical, mental and emotional health as well as pursue their own interests over and above their caring role.
Carers NSW Australia (2021) has a number of resources that can assist carers - http://www.carersnsw.org.au/ . In particular the organisation has recently developed a carer skills program around caring for an older person at home. There are six modules with practical information, strategies, resources, videos and advice to support you in your caring role. The information ranges from safety in the home, to self-care, legal documents, how to shower someone safely, equipment that may help and where to find it. The modules are
1. Positive approaches to caring
2. General knowledge
3. Taking care of you
4. Making day to day activities easier
5. Building confidence when moving others
6. Confidence with health care tasks
There are also manual handling skills videos available that cover topics such as how to safely assist someone to stand up, move chairs, get out of bed, get in the shower, and move in and out of the car. The videos are designed for people with good upper body strength who can hold their own weight when standing.
When working with young carers, the 2020 Carer NSW survey highlighted several factors that assist this group:
Trustworthy and supportive interactions are more likely to result in young carers seeking and maintaining support.
It is important that young carers have the opportunity to meet other young carers and hear their stories. This can strengthen carer awareness and understanding of caring for others.
Accessing digital information is an important support for young carers to enable them to access information to help in the caring role.
Service providers need to include young carers in conversations and communicate with them without confusing them with technical knowledge/jargon.
The study by Addo et al. (2021) added to these suggestions (see above for more detail from this study):
Find and refer young carers to support programs
Utilise a family-oriented approach when young carers are involved
Ensure a strengths-based approach is used with young carers.
Ending Caregiving (Former Carers)
When caring relationships, duties and roles conclude (e.g. the care recipient may recover, move to supported accommodation, or may die) carers become “former carers”. Social workers, with their skills in counselling and variety of practice approaches at their disposal, are ideally placed to support former carers who can experience the following (Kirby, 2021):
Carers worry about their own futures and life after caring, including fears about re-entering the workforce, housing and superannuation, as well as loss, loneliness, social isolation and financial security.
Former carers can experience after-effects, e.g. poor health, fatigue and exhaustion, depression, loneliness, and financial uncertainty.
Carers, especially those who are frail or ageing, worry about how care recipients will be looked after in the carer’s absence.
The end of ‘formal’ care does not necessarily constitute the end of caring responsibility; for example, former carers may continue to provide care for those in supported accommodation, sometimes battling to maintain quality care for the care recipient, and to still be recognised as a carer.
Placing a Person into Residential Care
A study by Graneheim, Johansson and Lindgren (2014) examining the experiences of 180 family caregivers from six different countries found family caregivers who placed a family member into care often passed through four phases: making the decision, living with the decision, adjusting to a new caring role and adjusting to changed relationships. Not everyone passed through all phases and not everyone came to peace with their decision. The key to successful resolution appeared to occur if the family caregivers were recognised as partners in the care of the family member.
Looking at the findings in more detail suggests the following strategies for family caregivers who have to cope with a decision to relinquish care of their family member and place him or her in residential care.
Recognise the phases that family caregivers will go through.
(i) making the decision, often with a feeling of guilt and shame,
(ii) living with the decision - oscillating between feeling relief / questioning the result
(iii) adjusting to the new caring role, i.e. monitoring someone else’s care, and
(iv) forming a new relationship with the family member and staff
At the same time family caregivers need to realise
not everyone passes through these phases,
the phases do not occur in a fixed order, and
the phases can overlap.
Engage in physical activity.
Seek professional or informal external support if the process is becoming too much personally or as a family. Informal support often comes from family and friends who have had the same experiences.
Avoid friends who express negative opinions about residential care.
Look at the positives that have occurred or will occur as a result of the family member being placed in care, both for the person concerned and the family as a whole.
If possible, visit the family member regularly.
Create positive relationships with the staff
Be positive with staff, recognising and commenting on efforts to help the family member adjust to changing circumstances.
Engage with staff about family member’s needs in a non-threatening and collaborative manner. If possible, offer to assist in any changes to care.
Remain actively involved with the staff and seek to inform them of the family member’s interests and ongoing needs. Ask to be involved in any review of family member’s needs.
(copies available on request)
The Carers NSW website contains numerous resources to assist carers. https://www.carersnsw.org.au/resources/carer-resources Use the search engine on the site to locate resources. Some resources include:
From Caring to Employment
Numerous fact sheets on COVID-19
Fact sheets for carers of people with disability, mental health issues, palliative needs, who are young.
Evacuation checklist and plan
Disaster planning Carers NSW Australia, 2021)
o Getting ready for disasters (five steps with relevant prompts and resources)
o Carer specific resources
o Resources from relevant organisations
o Recovery from a disaster
o Various checklists and disaster plan examples
Caring for someone using alcohol or other drugs
Tips for male carers and young carers
In 2020 the Australian Government established the CarerHelp website at https://www.carerhelp.com.au/tabid/5856/Default.aspx . This site has numerous resources to assist carers. It examines five carer pathways to help carers find information that is suited to their needs. These pathways are:
1. When someone needs care
2. Caring when death is a possibility
3. Preparing for dying
4. When the person is dying
5. After caring
Carers NSW Australia. (2022). Navigating My Aged Care handbook. Retrieved from https://www.carersnsw.org.au/uploads/main/Files/3.Resources/Carer/Navigating-My-Aged-Care-Handbook-final_May2022.pdf This recent resource has a comprehensive overview of Aged Care Services in Australia including a fee estimator.
Caregiver needs – dementia (2019)
Carer Health and Wellbeing
Mental Health Carers
Living with Multiple Sclerosis: The carer’s perspective (2019)
Understanding the social and emotional needs of carers: Final report (2019)
Carer Gateway Modules:
Dealing with stress
Effective communication techniques
Recharge and reconnect
Addo, I. Y., Aguilar, S., Judd-Lam, S., Hofstaetter, L., & Poon, A. W. C. (2021). Young carers in Australia: understanding experiences of caring and support-seeking behaviour. Australian Social Work. https://doi.org/10.1080/0312407X.2021.1971271
Aged Care Royal Commission (2019): Background Paper 6
Graneheim, U. H., Johansson, A., & Lindgren, B-M. (2014). Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study. Scandinavian Journal of Caring Science, 28, 215-224.
Kirby, E., Newton, G., Hofstatter, L., Judd-Lam, S., Strnadova, I., & Newman, C. E. (2021). (How) will it end? A qualitative analysis of free-text survey data on informal care endings. International Journal of Care and Caring, 20(20), 1-17. https://doi.org/10.1332/239788221X16357694113165
NSW Carers Strategy 2020-2030 and accompanying Action Plan 2020-2022 are available at https://www.facs.nsw.gov.au/inclusion/carers/nsw-carers-strategy
Carers NSW Australia. (2020). 2020 national carer survey: Summary report. Retrieved from http://www.carersnsw.org.au/Assets/Files/2020NationalCarerSurveyReport_print.pdf
Carers NSW Australia. (2020). Caring through crisis: COVID-19 handbook. Retrieved from http://www.carersnsw.org.au/Assets/Files/2010CN%20Caring%20through%20Covid%20handbook_Final.pdf
Carers NSW Australia. (2020). Young carer research project: Summary of findings. Retrieved from https://www.carersnsw.org.au/Assets/Files/Young%20Carer%20Research%20Project%20-%20Summary%20of%20findings.pdf
Carers Australia. (2021). Analysis of the Australia Government response to the Royal Commission into Aged Care Quality and Safety, final report: Care, dignity and respect. Retrieved from https://www.carersaustralia.com.au/wp-content/uploads/2021/07/Carers-Australia-discussion-paper-Governments-Response-to-ACRC.pdf
Carers Australia. (2022). Caring costs us: The economic impact on lifetime income and retirement savings of informal carers – a report for Carers Australia. Retrieved from https://www.carersnsw.org.au/uploads/main/Files/5.About-us/Our-research/Caring-Costs-Us_Summary-of-Findings_FINAL_120422.pdf
Carers NSW Australia.(2021). Caring through crisis: Disaster planning handbook.Retrieved from https://www.carersnsw.org.au/uploads/main/Files/2.Services-and-Support/Advice-for-Carers/Emergency-Planning/Caring-through-Crisis_Disaster-planning-handbook.pdf
Carers NSW Australia. (2022). Managing COVID-19 at home: A guide for family and friend carers. Retrieved from https://www.carersnsw.org.au/resources/carer-resources?keywords=covid
This guide is to assist carers to prepare for managing COVID-19 at home. It covers the following:
1. Preparing for COVID-19
Emergency care plan including a carer emergency card
Preparing for self-isolation
2. Finding out if you need to self-isolate
Rapid antigen tests
High and low risk exposures
3. Self-isolating safely
Pregnancy and COVID-19
Managing a baby or child with COVID-19
4. Managing practical challenges when self-isolating
Alternative care arrangements
Carers NSW Australia. (2022). Diverse carers: LGBTIQ+ carers. Retrieved from https://www.carersnsw.org.au/about-caring/who-are-carers/diverse-carers
This page provides information and resources to assist sexuality and gender diverse carers to access inclusive and timely support.
Smart, J., Muir, S., Hughes, J., Goldsworthy, Jones, S., Cuevas-Hewitt, L., & Vale C. (2022) Identifying strategies to better support foster, kinship and permanent carers. Australian Institute of Family Studies and Murawin. https://aifs.gov.au/research/research-snapshots/identifying-strategies-better-support-foster-kinship-and-permanent
Dao, N. (2021). Economic Impact of State Paid Family Leave Policies on Caregivers with Older and Disabled Adults. University of Wisconsin-Madison: Center for Financial Security. https://cfsrdrc.wisc.edu/files/working-papers/FellowFinalReport_Dao_Final_v2.pdf