A University of Queensland study has revealed that women are being compelled to care for family members with mild to moderate dementia because no else is willing or able to provide the care needed.
Dr Suzanne Cahill's PhD study titled I wish I could have hung on longer is a fascinating investigation into the almost-invisible world of home-based health care for frail aged people.
Dr Cahill says home-based health care for people with mild to moderate dementia will become a major community health issue in the next 10 years because of the rapid growth of Australia's aged population.
For her study Dr Cahill talked with family care-givers in Brisbane and asked them why they became care-givers, their experiences in the role and the reasons why they finally placed their spouses or family members into nursing homes.
Her research found that women nearly always took responsibility for the care of aging family members and they often did so by default because no one else was willing or able to provide care.
"Because women live longer than men, daughters are increasingly having to look after their mothers," Dr Cahill said.
"These women are often also responsible for looking after their own immediate families and working in part-time or full-time jobs."
It never occurred to some of the women that their brothers should be care-givers for parents; and the men usually expected their wives or sisters to accept the role.
"There is also a strong sense of duty in the decision to become a care-giver," she said.
"Women believed society expected them to be the carers and in the case of spouses, that care-giving was an extension of their marriage obligations: to be a good wife you owed your spouse on-going care."
Dr Cahill said study provided convincing evidence that care-giving adversely affected the women's psychological, physical and emotional health. This became one of the most important reasons for eventually deciding to place a spouse or family member into a nursing home.
But Dr Cahill found the decision to put the family member into a nursing home was very difficult and, rather than reducing burdens, tended to create new stresses and strains.
"The new arrangements distressed many women and triggered strong feelings of guilt.
Some are clearly devastated and feel a distinct sense of desertion and betrayal," she said.
"Putting loved ones into a nursing home to be cared for by strangers is like abandoning them. Care-giving becomes so central to their lives that, for some of the women, relinquishing their care-giving role symbolises the end of their relationship."
The majority of women visited the nursing home regularly and these visits were often very distressing particularly when in many cases spouses or parents no longer recognised them.
Dr Cahill's research found big gaps in the provision of community services and financial assistance for care-givers.
Most of the women used community assistance programs where they could but many services were not relevant, or were unavailable when most needed in the evening and during the weekend.
Dr Cahill said a survey of disability, aging and carers conducted in 1993 by the Australian Bureau of Statistics estimated that nearly half a million people who identified themselves as the principal carers of people with disability.
"It is likely these figures underestimate the real number of carers in the community because many women see care-giving as part of their normal wifely roles and do not identify themselves as principal carers," she said.
Dr Cahill said the value of unpaid care-giving work for the frail aged and those with disability in Australia was recently estimated to be more than $3.5 billion dollars annually.
For further information contact Dr Suzanne Cahill, telephone 3365 2285.
