Related Terms:

caring, disability older carers, aging and caring, elderly people and caring, disability, aging and disability, older primary carers, older care-givers, aging population, respite care

---

INTRODUCTION

Older people contribute to society in many ways. One of these is through providing care to others, some of whom may have disabilities. In 2006, it was estimated that the unpaid contribution of older people who provided care to people with a disability was $3.9 billion. (Endnote 1)

In 2009, although only around 13% of the population were aged 65 years and over, nearly 20% of all carers were of this age.

Providing care can have an impact on carers regardless of age. However, the impact on older carers may be exacerbated by factors such as their own age-related health problems, given that around half of all older carers (55%) had a disability themselves.

With the ageing of the population, and consequently an increase in the number of older people who may require assistance, it is likely that the demand for carers will increase. The role of carers in the community will, therefore, be of continuing importance.

Although there are many carers in Australia who provide formal assistance through organisations, this article focuses on the characteristics of people aged 65 years and over who provided some level of informal care to others with a disability or long-term health condition, or to other older people.

NUMBER OF CARERS OVER TIME

The total number of informal carers has risen from 2.3 million in 1998, or 13% of the total population, to around 2.6 million in 2003, still around 13% of the population.

In 2009, there were again around 2.6 million informal carers. However, the proportion of informal carers in the total population slightly dropped to 12%.

WHO ARE OLDER CARERS?

Primary carers and other carers

In 2009, there were approximately 521,000 carers aged 65 years and over. Nearly one fifth (19%) of people aged 65 years and over were carers, compared with around one tenth (11%) of people under the age of 65.

A number of people may provide care to one person, but in most cases, a person is cared for by a primary (i.e. main) carer. In 2009, nearly two in every five (38%) older carers, or 196,000 people, were primary carers. These older carers represented a quarter of all primary carers aged 15 years and over in Australia.

Male or female carers

In 2009, the proportion of older male and female carers was fairly even, though there were more male carers (54%) than female carers. The proportion of older male and female primary carers was also fairly even, but there were more female primary carers (54%) than male primary carers.

When an older woman took on the caring role, she was more likely to be the primary carer than would an older man who provided care - 44% of older female carers were a primary carer compared with 32% of older male carers.

WHY DOES SOMEONE BECOME A CARER?

Taking on the role of a carer can be a major commitment, and is done for a number of reasons.

In 2009, around half (53%) of older primary carers reported that they took on their caring role due to a sense of family responsibility and about half (52%) thought that they could provide better care than someone else. Further, around a third (36%) took on the role because they felt an emotional obligation, about a fifth (22%) had no other family or friends available while around 14% took on the role because alternative care was too costly.

WHO ARE OLDER PRIMARY CARERS CARING FOR?

In general, older primary carers were caring for a member of their family who they lived with. In 2009, nine out of 10 (92%) older carers were caring for one person, and 91% lived in the same household as the main person they cared for.

Around three quarters (77%) of older primary carers were the partner or spouse of the main person they cared for. Men (88%) were more likely to have provided care for their partner or spouse when compared with women (68%).

In addition, 9% of older primary carers were the parent of the main person they cared for. Elderly parents who are responsible for caring for their child are often very concerned about who will provide care to their child once they pass away. (Endnote 2)

Further, around 8% of older primary carers were caring for their parent. Given that older primary carers are 65 years and older, the person they are caring for was likely to be very elderly, at least in their 80s.

WHAT IS THE AGE AND DISABILITY STATUS OF PEOPLE BEING CARED FOR?

In 2009, four out of five (82%) older primary carers were providing care to a person aged 65 years and older, while nearly one fifth (16%) were providing care to a person aged between 35 and 64 years.

In 2009, nearly all those receiving care had serious core activity limitations (i.e. needed help in communication, mobility or self-care tasks). Of the main receivers of care who lived with their carer, more than half (56%) had a profound core activity limitation and nearly two fifths (39%) had a severe core activity limitation.

WHAT TYPES OF ASSISTANCE ARE PROVIDED BY OLDER PRIMARY CARERS?

Older primary carers provided assistance to the person they cared for in many ways, but some types of assistance were required more than others. In 2009, older primary carers usually assisted the person they provided cared for with tasks related to mobility (78%), self-care (61%), and to a lesser degree, communication (32%). Men were more likely to assist with mobility tasks, while women were more likely to assist with communication and self-care.


DO OLDER CARERS HAVE THEIR OWN DISABILITIES?

Older carers were slightly more likely (55%) to have a disability themselves than older people who were not carers (50%).

Further, while four fifths (80%) of all older carers with disability did not require assistance with core activities, one in five (20%) had a severe or profound disability themself. Therefore, these carers were providing care to someone while needing some form of assistance themselves.


PHYSICAL AND EMOTIONAL AFFECTS OF CARING

In 2009, nearly three quarters (72%) of older primary carers thought that their physical or emotional wellbeing had not changed because of their carer role. Moreover, about one third (32%) felt satisfied with their role as carer.

However, around 29% reported that they lacked energy or felt weary because of their caring role and about a quarter (24%) frequently felt worried or depressed.

HOW MUCH TIME DO OLDER PRIMARY CARERS SPEND CARING?

The years of care provided by older carers varied. In 2009, nearly two fifths (39%) of older primary carers had provided less than five years of care, about a quarter (26%) had provided between five and nine years of care and more than a third (36%) had provided ten or more years of care.

For most older primary carers, the main person they cared for was their partner. However, for those older primary carers who had been providing care for 10 years or more, one in five (22%) cared for their child, and 69% cared for their partners.

In 2009, 85% of parents who provided care to their child had done so for 10 years or more. Additionally, nearly a third (32%) of older primary carers who provided care to their partner had done so for 10 years or more.

The number of hours per week spent providing care varied. Around two fifths (41%) of older primary carers provided care for less than 20 hours per week while a similar proportion (42%) provided care for the much longer period of 40 or more hours per week.


OLDER CARERS AND WORK

Although most people aged 65 years and over are not in the workforce, in 2009, around 8% of older primary carers were still employed, despite also having the responsibility of being a primary carer. However, this proportion was lower than other carers or other people in that age group (both 12%).

Employed older primary carers were more likely to have worked part time (78% of primary carers, 57% of other carers and 56% of non-carers). This, in conjunction with the lower employment rate for older primary carers, indicates that older primary carers are much less involved in the labour force than others aged 65 years and older. That is, older primary carers are less likely to be employed and more likely to work part time.

The majority (79%) of older primary carers who were unemployed or not in the labour force at the time of survey were also not working just prior to taking on the caring role.

However, of the older primary carers who were unemployed or not in the labour force at the time of the survey but were working just prior to taking on the caring role, two fifths (42%) left their job because of retirement, while around a fifth (22%) had left their job to become a carer.


SUPPORT FOR CARERS

Respite care

Although caring for someone can be rewarding, at times the work and responsibility of being a carer can be both exhausting and overwhelming. (Endnote 3) Respite services can provide some relief to the carer, their families, and those requiring care.

While many older primary carers do not feel they need to use respite care, some want to, but encounter barriers that stop them from doing so. Some carers feel they are neglecting their responsibilities if they use respite care, and others feel guilty about enjoying their time while the person requiring care is in respite. (Endnote 4)

In 2009, the majority of all older primary carers (89%) had never used respite care. Nearly three quarters of these carers (72%) didn’t think they needed it while a further 20% never used respite care because either the carer or the person being cared for did not want it.

Of the 23,000 (12%) older primary carers who needed respite care, or more respite care, more than two fifths (43%) had previously used respite care and needed more, while nearly three fifths (57%) had never received respite care but needed it.

Is more support needed?

In 2009, nearly two thirds of all older primary carers (64%) did not require additional support or improvement in their current situation to aid their role as a carer.

However, some older primary carers felt that they did need more support or an improvement in their situation in a number of areas. The most common types of support needed were for more financial assistance (18%), more physical assistance (14%), and more respite care (12%).

LOOKING FORWARD

Population projections predict a rise in the number and proportion of older Australians with a disability. (Endnote 5) Given this, the importance of the health and wellbeing of all people involved in caring is, and will continue to be, a key concern.

In 2009, a parliamentary inquiry aimed at understanding the challenges facing carers inspired the National Carer Recognition Framework. (Endnote 6) This framework includes the Carer Recognition Act 2010, which aims to increase recognition and awareness of carers and to acknowledge the valuable contribution they make to society. (Endnote 7) Similar legislation has been put in place, or has been proposed, in all states and territories. (Endnote 8)

The National Carer Recognition Framework also includes the National Carer Strategy, which aims to provide carers with services and supports that are coordinated, flexible, appropriate, affordable, inclusive and sustainable. (Endnote 9)

These recent measures signify the contribution of carers to society. With the ageing population in mind, the role of carers in the community will be of continuing importance.

EXPLANATORY INFORMATION

Data sources and definitions The main data source for this article is the ABS 2009 Survey of Disability, Ageing and Carers. In this article, an older carer is defined as a person aged 65 years and over who provides any informal assistance, in terms of help or supervision, to people with a disability, long-term condition or people who are elderly (60 years and over). This assistance has to be ongoing, or likely to be ongoing, for at least six months. Disability refers to a limitation, restriction or impairment, which has lasted, or is likely to last, for at least six months and restricts everyday activities. Formal assistance includes help provided to persons with one or more disabilities by organisations or individuals representing organisations (whether profit making or non-profit making, government or private). Formal assistance providers are persons (excluding family, friends or neighbours as described in informal help) who provide assistance on a regular, paid basis and who were not associated with any organisation. Impairment refers to a loss or abnormality in body structure or physiological function (including mental functions). Informal assistance is unpaid help or supervision and includes assistance that is provided because of a person's disability or because they are older. Informal assistance may be provided by family, friends or neighbours. Further, any assistance received from family or friends living in the same household was considered to be informal assistance regardless of whether or not the provider was paid. It does not include providers whose care is privately organised for profit. Long-term condition refers to a disease or a disorder which has lasted or is likely to last for at least six months; or a disease, disorder or event which produces an impairment or restriction which has lasted or is likely to last for at least six months. Primary carers are people who provide the most informal assistance, in terms of help or supervision, to a person with one or more disabilities. The assistance has to be ongoing, or likely to be ongoing, for at least six months and be provided for one or more of the core activities (communication, mobility and self-care). Respite care services provide alternative care arrangements for people with one or more disabilities, or older people, to allow carers a short-term break from their care commitments. Core activity tasks Communication tasks refer to activities that can include understanding others and being understood by others. Mobility tasks refer to activities that can include getting into or out of a bed or chair, moving around the home, moving about a place away from home, and walking up and down stairs without a handrail. Self-care tasks refer to tasks that can include activities like showering or bathing, dressing, eating, toileting and bladder or bowel control. Core activity limitations Four levels of core activity limitation are determined based on whether a person needed help, had difficulty, or used aids or equipment with any of the core activities. A person’s overall level of core activity limitation is determined by their highest level of limitation in these activities. The four levels of limitation are: Profound - The person is unable to do, or always needs help with, a core activity task. Severe - The person sometimes needs help with a core activity task; has difficulty understanding or being understood by family or friends; can communicate more easily using sign language or other non-spoken forms of communication. Moderate - The person needs no help, but has difficulty with a core activity task. Mild - The person needs no help and has no difficulty with any of the core activity tasks, but uses aids and equipment; cannot easily walk 200 metres; cannot walk up and down stairs without a handrail; cannot easily bend to pick up an object from the floor; cannot use or has difficulty using or needs help or supervision with public transport.

ENDNOTES
1. National Seniors Productive Aging Centre (NSPAC), 2009, Still putting in. Measuring the economic and social contributions of older Australians, viewed 20 November 2012, <www.productiveageing.com.au>.2. Aged Services Learning and Research Collaboration (ASLaRC), 2008, Futures planning for older carers of adults with disabilities, viewed 19 November 2012, <www.scu.edu.au>.3. Living Caring Working, 2012, Looking after yourself-emotionally, viewed 7 September 2012, <www.livingcaringworking.com>.4. Carers Northern Territory, 2012, Respite, viewed 13 August 2012, <carersnt.asn.au>.5. Giles, C., Crotty, M., & Cameron, I., 2003, Disability in older Australians: projections for 2006-2031. The Medical Journal of Australia, viewed 3 October 2012, <www.mja.com.au>. 6. House of Representatives Standing Committee on Family, Community, Housing and Youth, 2009, Who cares…? Report on the Inquiry into better support for carers. Canberra: Commonwealth of Australia, viewed 7 August 2012, <www.communities.wa.gov.au>.7. Commonwealth of Australia, 2010, Carer Recognition Act 2010. Canberra: Commonwealth of Australia, viewed 7 August 2012, <www.comlaw.gov.au>.8. Care Aware. National Carer Awareness Initiative, 2012, Official Carer Recognition, viewed 10 September 2012,<careaware.com.au>. 9. Department of Families, Housing, Community Services and Indigenous Affairs, 2012, National Carer Strategy, viewed 7 August 2012, <www.fahcsia.gov.au>.