A carer is someone who provides informal unpaid care and support to a person who needs help due to disability, a mental, chronic or terminal illness, or who is frail or ageing. Carers provide billions of hours of unpaid care annually, and play a substantial role in assisting people who need help in their daily lives. One in nine Australians provide care and support to someone. Almost one in five carers are aged over 65. According to the ABS, there were 2.7 million unpaid family carers in Australia in 2015. Of these, around one in three are primary carers (those who provide the most care). Carers may be family members such as a spouse or partner, parent, son or daughter, brother or sister, grandparent, neighbour or friend. Some carers see themselves as a family member who looks after a person they love, not as a carer, which means they may not seek help.
Changing demographics and current health trends, like population ageing, increased lifespan, incidence of dementia and mental health conditions are increasing the demand for informal care. Each older person has different care needs. ‘My Aged Care’ has resources, services and recommendations when caring for someone with a particular need, or in a particular situation, including living with:
Becoming a carer can occur suddenly for some people which can bring challenges. Main carers tend to be older than other carers, female and are more likely to live with disability. The majority care for their partner, with a smaller proportion caring for their child or parent. Each caring role is different, and the needs of carers and the person they care for differ. Carers are less likely than the general population to be employed, as some leave their jobs to care full-time. Support for carers includes counselling, financial assistance, and support groups.
Carers often help with daily living tasks, including personal care, shopping, meal preparation and feeding, administering medications, attending medical appointments, and emotional support. Carers are vital in the care and support of people with life-limiting or terminal conditions, however, many carers themselves face challenges of their own. They may not identify with the term and may be unaware of the supports available. Many older adults have a reciprocal caring relationship, where each partner may be both a carer and care recipient.
Carers who spend more time caring experience worse health and well-being. Relationships between carers and the people they care for can change over time, due to stress and associated mental and physical health impacts. Relationships may feel strained or be stronger than ever. Aspects of caring can be enjoyable and rewarding, but carers may experience social isolation, physical and emotional strain, and limited education and employment opportunities. Carer burden and exhaustion are common, as are experiences of distress or guilt when carers leave the home or engage in activities over and above their caring responsibilities. Females are more likely to experience carer burden compared to males.
Carers need support and recognition for their contribution. To maintain their own health and well-being and avoid burn out, carers are advised to look after themselves, participate in the usual activities they enjoy outside of their caring role, and seek support to help them to continue providing care. Carers often require several types of support, including practical, emotional, informational and financial. Discussing roles and responsibilities with doctors or counsellors may help. The DSS provides advice and assistance, and information on counselling, support and advocacy for carers. Short-term counselling and emotional support for carers is available through the National Carer Counselling Program (NCCP), to help reduce stress and improve coping skills. Better Health Victoria provides information and tips for carers to maintain self-care and well-being while caring for someone at the end of life. Live-in care support, regular home visits, and short-term respite for frail older adults and those with life-limiting illnesses can limit carer burden and depression by providing time for rest and recovery. The DSS have information about Carer Directed Respite Care.
Carers from different backgrounds often have different needs. According to the ABS, Aboriginal and Torres Strait Islander people were more likely than non-Indigenous people to provide unpaid care across the lifespan, particularly among younger people. Younger, female, culturally and linguistically diverse (CALD), and socioeconomically disadvantaged carers are more at risk of carer burden. Young Carers Network assists young carers to share their stories, learn new skills, and attend live webinars. National and state-based caring resources for Aboriginal and Torres Strait Islander carers and CALD carers are also available. Children and teenagers caring for a person receiving palliative care often need more support to access services for themselves and for those they are caring for. Palliative Care Australia’s National Palliative Care Service Directory can assist in locating supports. Carers in rural areas are often more isolated, and may benefit from local support groups and telehealth initiatives.
Understanding cultural values about the responsibility to care is important in supporting carers of all backgrounds to maintain their own health and well-being while they care. Carers from a CALD background may lack formal assistance and support in their roles. This may be due to language and communication difficulties, family and cultural expectations, and a lack of culturally appropriate services. Using translating and interpreting services and working with culturally-specific organisations can help to provide culturally appropriate information and support to these carers.
The stress carers experience is well recognised, and resources and support are available. Respite, provided either in the home, community, or residential facility, allows carers time to themselves. The Department of Human Services provides information about carer payment, carer allowance and carer supplement. Some carer payments may continue short-term after the death of the care recipient. Centrelink (132 717) has more information about eligibility for financial assistance for carers of older people. The Australian Government Commonwealth Home Support Program (CHSP) includes government-subsidised respite, and the Commonwealth Respite and Carelink Centre website and phone line (1800 052 222) provides resources and support for carers.
The Department of Social Services provides information to support carers
including programs, services, and payments which may be available. Carers Australia
, the national peak body representing Australia’s unpaid carers, advocates on behalf of carers to influence policy and services nationally. Mind Australia
have a Carer Helpline
(1300 554 660) for carers of people living with mental ill-health. Me Well
have also compiled information to support carers
. My Health Record
provides an online summary of key health information.
Aged care and palliative care considerations for carers
Most older people want to be cared for and die at home in familiar settings with their loved ones. Remaining at home is more likely when carers are willing and able to provide care and support for the dying person. Informal care provision in Australia is a major contributor to people being able to remain in their homes in older age, rather than moving to residential aged care facilities. Support provided by carers towards the end of life helps people to live as well as possible. Caring for someone at this time is a big commitment, and carers often experience challenges and emotional strain associated with caregiving at the end of life. Anxiety, sadness, and anger are common reactions to the news that the person they are caring for is dying. Carers may experience fatigue, resentment, helplessness, depression, stress, social isolation, and financial strain. CarerHelp contains useful information, videos, resources, and support to people caring for someone at the end of life.
Carers can provide different levels of support to people at the end of life. They may live with, or separately from the person they care for. For some carers, providing palliative care at home means they provide 24-7 nursing care for someone with high-support needs. Other carers may have a less intensive caring role where the person they are caring for is quite independent but might need help with particular tasks. Caring for someone who is nearing the end of their life at home often involves daily living tasks including:
- personal care and assisted living, including help with bathing, dressing, toileting and continence care
- medication support, including managing medication and pain management
- housekeeping and maintenance, including meal preparation
- caring for children or pets
- running errands such as banking, collecting prescriptions or grocery shopping
- emotional support and companionship
Formal supports which can assist carers to provide care to the person they are caring for at home and towards the end of life include:
- home modifications and repairs
- domestic assistance
- meal delivery
- in-home support services and equipment
- access to relevant information, education and resources
- advice on providing care, pain management, and medications
- nursing care, specialist palliative care support and involvement of allied health professionals
- access to planned and emergency respite care and support services
- identification of carers’ emotional and physical health needs, including during bereavement
- counselling for carers
- sensitive workplace policies to support flexible working hours and leave arrangements for carers
- greater and timely access to financial support
- access to transport
- after hours advice and support
My Aged Care (1800 200 422) has information about services and support to help people in their caring roles, including providing information about caring for someone at home, caring for someone with a chronic disease, or caring for someone in residential aged care. Carer Gateway is a national website and phone service (1800 422 737) that provides practical information, phone counselling, and resources to support carers, including an online carer forum, self-guided coaching, and skills courses.
Carers may have difficulty letting others take over caring tasks; however, caring demands increase as illnesses progress. Accepting help can mean carers can spend more quality time with the person they care for. Carers are considered part of the palliative care team and can be supported in their role to address the patient’s physical, practical, emotional, spiritual and social needs. Palliative care involves a range of services offered by doctors, nurses, allied health professionals and volunteers. Palliative care teams determine the best place for care, including from home, in hospital or in a palliative care unit (hospice) or at a residential aged care facility. Palliative care teams can reassure carers, suggest self-care strategies and relevant support groups, help them to understand health issues and symptom management, and provide access to local respite options. This can help to reduce carer burden and focus on the positive aspects of caring.
The Department of Health has information about palliative care for carers. Palliative Care Australia have carer factsheets and video resources, and Palliative Care Victoria have created a carer guidebook titled ‘Supporting a person who needs palliative care: a guide for family and friends’. AHHA have developed online training modules for palliative care to help carers and others who provide palliative care to older adults in the community, to increase their skills and confidence. Barwon Health have developed an information toolkit for carers of palliative care patients in home settings.
Caring in a palliative setting is complex; carers may face challenges around pain management, managing cognitive decline, increased dependency, and ultimately, issues around grief and bereavement following the death of the person they care for. Carers may experience grief before the death of the person they care for (even as early as diagnosis). Information on grief and bereavement is available via the palliAGED website. CarerGateway have compiled information for carers regarding planning for the end of life. CareSearch also have information and resources for patients, carers and families providing support at the end of life. The Cancer Council can be reached on 13 11 20, and has produced booklets on palliative care (423kb pdf), and information about caring for someone with advanced cancer. Palliative services tend to be geared more towards supporting carers for people with cancer, yet there is an increasing need to help carers of people with other illnesses.
There are also various clinical and medical resources available to help people who are caring at home towards the end of life. Caring@home have developed an informational factsheet for carers delivering subcutaneous medicines (1.9MB pdf) to the people they care for and managing breakthrough symptoms safely. They provide practical information appropriate for all jurisdictions in Australia, and parts of the carers’ package are available in several different languages. Recording medication requirements via Medi-List can also be a useful practice, as well as using carer’s symptom management sheets and safety cards to inform carers about what to do when the person they care for experiences worsening or distressing symptoms.
Carers and advance care planning considerations
Talking about illness and death can be confronting, so it is important that communication remains open between carers and the person they care for. Carers are often burdened by decision-making responsibilities where the people they care for have not made their end-of-life wishes known. Advance Care Planning Australia (ACPA) provides state-based information to enable Australians to make the best choices for their life and health care. Advanced care planning can reduce anxiety over the wishes of the individual, particularly in the event of a crisis or rehospitalisation. Written documentation can reassure carers, and can lessen family conflict.
Carers are an important link between the person receiving care and health professionals, as they have first-hand knowledge of and experience with the person they care for and their preferences. They should be included in decision-making of the person they care for, where this is wanted and safe to do so. Sometimes privacy and health records acts limit the type and extent of information that carers and families can be given. The Office of the Public Advocate can provide information about making decisions on 1300 309 337. Once an advance care plan has been completed, it is useful to discuss and review the plan if required. Developing an Emergency Care Plan so alternative arrangements exist for the person you care for is recommended.