It is easy to take carers for granted. What is more natural than for families and friends to look after their own? The rhetoric is that carers take on the job because they want to, from love. In many cases this is true, but the results of a survey conducted by the Carers Association of Australia show that in fact, carers may have few choices and that they pay a considerable price.

The report, released in October, is called Warning - caring is a health hazard. It was compiled from 1449 responses to 15,000 survey questionnaires distributed to carers throughout the country. The survey was a seven-page document aimed at finding out how caring had impacted on carers physical, mental and emotional health and wellbeing. It asked for details of injuries caused by caring, compensation received and what, if any information or training carers had received to help them avoid or minimise injury. It also asked what practical and emotional support they had received, how much of their time they spent providing care and how being a carer had impacted on their life opportunities and choices.

The report shows that while caring for someone can be a positive experience, many carers are being harmed physically, mentally, emotionally and socially by their caring responsibilities, but have few, if any ways to avoid that harm.

The respondents are representative of the wider carer community in terms of gender (71% female) and number of years caring (86% had been caring for between three and more than 10 years), compared with the 1998 ABS survey, Disability, Ageing and Carers: Summary of Findings. However, they are older, more isolated and more often caring for partners than the wider community. This means that younger carers, indigenous carers and carers from a CALD background are under-represented.

Carers were asked to rate their overall health and wellbeing. A total of 46% said that it was only fair or poor and it was likely to be worse, the longer they had been caring. Only 10% rated their health as excellent or very good. Up to 30% had health problems which they had not addressed or had delayed seeking help for because of their caring role,

‘Breast scan and mammography I keep putting off, as I can’t imagine if I have a lump how I can manage’. A 40-59 year old woman caring for her husband who has dementia.

Nearly 59% reported that their health was worse as a direct result of caring. Among the negative physical changes were:

• Tiredness or exhaustion (55%)
• Upper body problems (34%)
• High blood pressure and other heart problems (13%)
• Arthritis (l0%)
  

They attributed these to a range of difficulties including;

• The constant pressure of caring (41% and up to 48% for the carers of children with disabilities)
• Stress (33%)
• Disturbed or lost sleep (32% and up to 39% of male carers)
• Moving the person needing care (31%) This got worse the longer the care situation went on (up to 38%) and for the carers of children with disabilities (43%)
  

‘Twenty-four hour care of my son causes the fatigue and stress due to his many health problems, which I have been told has jeopardised my immune system. Constant lifting has caused the increase in back pain and strains.’ A 25-39 year old woman, caring for her son, who has an intellectual disability.

Nearly a third of all carers had been injured at least once in the course of caring. This increased to 46% of parent-carers. The injuries included sprains, strains, cuts, bruises, bites and even fractures and dislocations. Six percent of male carers had suffered hernias.

The report estimated that the annual injury rate for informal carers was five percent. If this figure is extrapolated to the 450,900 private primary carers identified by the ABS survey, the number of carers likely to be injured each year is 22,500. The cost of this (measured against work related compensation claims for paid care workers) would be $144 million.

Only two percent of family carers received any financial compensation for their injuries. All the costs - physical, financial and personal - of deteriorating health due to caring are borne by carers themselves.

‘Don’t blame me for being bitter. I was five weeks in hospital, nearly died and struggled to walk after major surgery. I got not one cent for all the years I have been a carer and no deductions from my income tax.’ A woman 75+ years of age, caring for a relative who is frail and has an intellectual disability.

Of carers who were injured, 60% got worse because they had no choice but to continue their caring work. At least half the respondents had never received information on how to avoid injuries.

Two-thirds of carers said that their mental/emotional wellbeing had been affected by caring, with 85% feeling worse. Most were sad or depressed and anxious or worried. Smaller numbers mentioned being mentally exhausted, stressed, bored, frustrated and easily upset.

Most (51%) attributed these problems to the stress of caring, social isolation, loneliness, changing relationships, loss and grief. Worsening physical health and being unable to continue paid work were also significant factors for some carers.

The only positive change reported by a statistically significant number of carers (about 10%) was a sense of satisfaction or fulfillment from the caring role. Parent-carers were less likely to feel satisfied or content, but some said they were mentally stronger and were more understanding, accepting or considerate.

‘Caring has made me stronger and more assertive. It has led me back to my faith, which has been a wonderful influence on my life.’ A 40-59 year old woman, caring for her parents who have dementia and other health problems.

Thirty-four percent said they did not have enough practical support, with the figure rising to 46% among parent-carers. The kinds of practical support they wanted included respite (32%) emphasising their need to rest and to have their own health problems treated. Support groups were valued by 30% and more home help of various kinds by 23%.

Only 44% felt they were receiving enough emotional support. Mostly this came from family members, other relatives, friends and neighbours. It was valued most highly by 57% of respondents.

Thirty-seven percent said that the behaviour of the person they cared for caused them the most stress. This included mood swings, anger and various kinds of abuse. Grief and loss and inability to communicate with the person being cared for were significant for 13% of each. Contact with service providers was also seen as stressful, especially for carers of children with disabilities (16%).

Carers’ ways of coping centred on having a break or tuning out.

Eighteen percent enjoyed gardening or nature, 18% read, 13% had hobbies or pastimes, 11% used relaxation techniques, 10% exercise, 10% music, 8% tried to stay positive and 8% got help from religious faith.

The survey demonstrates that carers’ needs are not uniform. The carers of children with disabilities are missing out and the carers of people with challenging behaviours are particularly stressed. The report recommends that services need to take various forms to meet this diversity.

More than half the carers said that caring had a major or dramatic effect on their lifestyles and life opportunities. Most common effects were reduced or no opportunities for work, study, community involvement, travel, holidays, social life, relationships, hobbies and pastimes.

The survey shows that carers’ needs are so poorly met that their health and wellbeing is in jeopardy. They are indeed being taken for granted, ignored and not heard. Very few have any real choices about how they carry out their caring role, let alone about whether they do it at all.

This survey mirrors the results of a 1998 survey in the UK and points to even more disturbing finding from the US last year, that caring is a significant factor in the mortality of carers.

‘I can no longer face what is obviously in front of me. It’s ironic, really, that after a lifetime of caring it will probably be me who finishes in a nursing home.’ A 60-74 year old woman, caring for her husband and child who have a number of health problems.

Warning-Caring is a Health Hazard costs $20 (incl. GST and postage)
For copies please contact;
The Carers Association of Australia
PO Box 3717
Weston ACT 2611
Tel: 02 6288 4877
Email: caa@carers.asn.au