What roles do carers and/or families and relevant others play in the support of an individual with a disability?

We work to develop our services so that you feel supported and have been given useful information by Neami staff when needed. This way you are best able to undertake your roles – one of which is to be there as a carer.

Understanding your role in a person’s life

We define carers and families as people who have an interest in a person’s wellbeing, who are affected by their illness or provide support to them at times of need. Carers do not need to be a blood relative and can include parents, children, siblings, spouses, friends, neighbours and others in a person’s life.

We believe that:

• Recovery is supported within an environment including carers and families. You can provide us with useful information to support a persons’ recovery work.
• Having a strong network of support aids recovery, so working with you and the person together may lead to the best possible outcomes.

• You have a right to be included in the work that occurs between a staff member and the person as it may have an impact on your life as well. For more information on how we can include you in our work, please read the section 'Working together with you'.

• You may also experience changes in your life when a family member/person you care about becomes unwell and may also need support.

Other than the person themselves, you often spend the most time with the person and therefore may like to contribute ideas on what may be useful moving forward.

On this page:

• Who are carers?
• Who are young carers?
• What do carers do?

Who are carers?

Carers are people who provide ongoing, unpaid support to people who need it because of disability, chronic illness, mental illness, frail age, dementia or drug or alcohol dependency. This includes foster carers who are caring for a child that needs additional support due to one or more of these conditions.

In many cases, people who perform caring duties do not think of themselves as carers. This is because they are looking after someone they love.

There are over 850,000 carers in NSW. This includes people of different cultural backgrounds, ages, religions, genders and sexual orientations.

Who are young carers?

Young carers are children or young people (aged 25 years and under) who provide ongoing unpaid support to people who need it because of their disability, chronic illness, mental illness, drug or alcohol dependency, dementia, or frail age.

Young carers have a level of responsibility that would usually be associated with an adult. They also have to juggle these responsibilities with other important activities such as attending school, university or work.

What do carers do?

A carer’s responsibilities will depend on the needs of the person they care for. Some carers help with daily activities such as preparing meals, bathing, dressing, going to the toilet and taking medicine. Other carers look after people who are mostly independent but need help with tasks such as banking, transport, shopping or housework. Every situation is different.

For more information about the role of carers and support services available for carers in NSW, click here.

Mental health statement of rights and responsibilities

1. This statement acknowledges the contributions and expertise of informal, professional, non-professional and statutory carers and support persons.


2. Australian governments and the Australian community should endeavour to assist carers and support persons in their respective roles.


3. Carers and support persons who are young have special needs and are entitled to special support and consideration.


4. Carers and support persons have the right to:
   
   1. respect for their individual human worth and dignity
   2. respect for their privacy
   3. respect for their confidentiality
   4. comprehensive information, education, training and support to facilitate their care and support roles
   5. receive services that assist them to provide care and support
   6. contribute to and participate in the development of social, health and mental health policy
   7. place limits on their availability to the mental health consumer
   8. access mechanisms of complaint and redress if they are dissatisfied with the treatment or support provided to the mental health consumer
   9. receive support for their own difficulties that may be generated through the process of supporting, caring for or acting as an advocate for the mental health consumer
   10. provide information concerning family relationships and any matters relating to the mental state of the mental health consumer to health service providers.
   
   
5. With the consent of the mental health consumer, and where it is appropriate to do so in accordance with legislation and policy, guardians, carers and support persons have the right to:
   
   1. contact the mental health consumer while they are undergoing treatment
   2. participate in treatment decisions and decisions about ongoing care
   3. seek and receive additional information about the mental health consumer's support, care, treatment, rehabilitation and recovery
   4. be consulted by service providers about treatment approaches being considered for the mental health consumer
   5. arrange support services for the mental health consumer, such as respite care, counselling and community care facilities
   6. be provided with any information that the mental health consumer requests they should receive.
   
   
6. Carers and support persons have the responsibility to:
   
   1. respect the humanity and dignity of the mental health consumer
   2. consider the opinions and skills of professional and other staff who provide assessment, individualised care planning, support, care, treatment, recovery and rehabilitation services to mental health consumers
   3. cooperate, as far as is possible, with reasonable programs of assessment, individualised care planning, support, care, treatment, recovery and rehabilitation.
   
   
7. Families, guardians, carers and support persons of children and young people have the responsibility to obtain appropriate professional assistance if they believe that a child or young person has a mental health problem or a mental illness.

Unpaid carers

People take on a carer role for someone they know to improve that person’s quality of life. Carers may be partners, parents, sons or daughters, siblings, other relatives, friends or neighbours.

Sometimes a person takes on a care role gradually, supporting the person more and more as their health or ability to care for themselves diminishes over time. Sometimes a care role comes about suddenly such as after an accident or after a health crisis (for example, a stroke or heart attack).

Carers can help someone to be as independent, healthy and well as possible. This might be through helping someone stay connected to their local community, or be physically and mentally active, or eat nutritious food. Some carers might have to help someone with tasks like banking, shopping and housework where the person is quite independent. Other carers may have a more intensive care role helping with all daily living tasks – feeding, bathing, dressing, going to the toilet and taking medicines.

Deciding to become a carer

Taking on a care role can be a big commitment. In some cases it can mean giving up other activities or responsibilities, including other work opportunities, which could have a significant financial impact. Some people see taking on a care role as their duty – either to a partner, parent, sibling or grown child – that they take on willingly. Others see it as their responsibility to bear because of cultural reasons or simply because there is ‘no one else who can do it’.

When deciding if you are willing to become a carer it might help to consider the following:

• How much care does the person need? Will it be only for a few hours a day or all day and night? Could someone else help (including formal and informal respite)?
• How can you support the person to keep on doing the things they love at home or in their local community? Who else could help?
• How could you best support the person’s independence, health and wellbeing? The person’s capabilities and interests may change over time, but maintaining independence, health and wellbeing will always be important.
• What kind of care does the person need? Do they only need help with a few tasks such as laundry, meals and taking their medicines or do they need more basic needs met such as help with dressing, eating, showering and going to the toilet? Are you able to provide the support they need?
• Can you afford it? Taking on a care role might mean cutting back or giving up employment. It might even leave you out of pocket in terms of purchasing aids and equipment required to support the person (installing hand rails, buying a special chair). Investigating your eligibility for government supports might be a part of your decision-making process.
• Do you want to do it? Sometimes you might feel like you do not have a choice in the matter, but you also need to consider your own needs. You will be no good to the person or to yourself if you resent your care role.

Carers say there can be many rewards to caring including:

• the satisfaction of knowing you have helped someone who needs you, enabling them to improve their quality of life
• strengthening the relationship with the person you care for
• the opportunity for personal growth and to develop new skills
• proving to yourself that you can meet new challenges
• appreciation from the person you care for and acknowledgement from family and friends.

But there can also be many challenges, which include:

• the financial hardship associated with having to give up or cut back hours in a paid job or career
• the emotional and physical toll associated with looking after another person day and night
• the lack of satisfaction that you previously got from a stimulating career or job
• developing health issues such as back problems, anxiety or depression
• the continuous nature of some care roles
• feeling isolated and missing the social opportunities associated with work, recreation and leisure activities.

Supporting carers and the people they care for

Carers play an important role in our society, creating many social and economic benefits for themselves, the people they care for and the whole community. There is a wide range of services and organisations that support the health, wellbeing and independence of carers and the people they care for. This helps them to maintain their relationship with each other.

To help you in your role as a carer you might consider:

• applying for Australian Government financial support, such as the Carer Payment and Carer Allowance
• respite care inside the home or outside (where both you and the person you care for can have a short break from the care relationship)
• other types of support that may be available, for example support to spend time together doing something you both enjoy
• asking other family members or friends of the person to help you on a regular or informal basis
• joining a local support group for carers
• contacting Carers Victoria to have a chat when caring gets tough.

Where to get help

• Your doctor
• Your local council
• Carers Victoria , call (03) 9396 9500

This page has been produced in consultation with and approved by:

This page has been produced in consultation with and approved by:

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