The hardest thing we have ever done - Palliative Care Australia

96 years. A combination of loss, prolonged distress, the physical demands of caregiving, and
biological vulnerabilities of older caregivers may compromise their physiological functioning
and increase their risk for physical health problems leading to increased mortality.
Navaie-Waliser et al (2002) examined the characteristics, activities and challenges of 1002
informal caregivers with poor health or a serious health condition. Compared to nonvulnerable
caregivers, this vulnerable group was more likely to provide higher-intensity care,
to report that their physical health had suffered since becoming a caregiver, to be aged 65
years or older, to be married and to have less than twelve years of education. The authors
cautioned that reliance on informal caregivers without considering their ability to provide
care can create a stressful and potentially unsafe environment for both the caregiver and the
care recipient. Livingston et al (1996) compared the mental health of a representative
community sample of carers of elderly people with dementia, depression or physical
disability with the mental health of other adults living in the household and of those living
alone. Depression was more common in the carers of people with a psychiatric disorder
(24%) than in co-residents (11%) and in those living alone (19%). Depression was most
common (47%) in women carers of people with dementia. Being a woman carer was a
significant predictor of psychiatric illness.
Even when care recipients are admitted to residential aged care, carers experience guilt and
grief, suffer from loneliness, feelings of failure and feelings of financial and emotional
insecurity. Family members of residents with dementia tend to have poorer wellbeing than
family members of other residents (Nay, 1997; Toye et al, 2003).
Carers of people with neurodegenerative conditions
Carers of people with Motor Neurone Disease (MND) are at particularly high risk of burnout
due to the complex nature of the disease, the degree of potential disability involved, its
uncertain course and its potentially rapid rate of progression, thus leaving many carers
unprepared and floundering with high levels of anxiety, stress and fatigue (Richter, 2003).
The complex physical needs of people with MND are inadequately met in residential
facilities. Many families of individuals with chronic and progressive conditions such as MND
and Muscular Dystrophy (MD) may not be usual recipients of palliative care services (Dawson
& Kristjanson, 2003). Professional services usually focus on the medical and physical needs
of patients with these conditions and carers receive little guidance for their role (Denham,
1999). With the progress in medical technology increasing the lifespan of the care recipients
and the period of dependency on receiving care, carers indicated a sense of isolation, loss of
contact with family and friends and loss of social networks in general, loss of the retirement
years and loss of dreams. Carers stated that their lives were on hold and totally occupied
with their carer role. Therefore, they were concerned about their future and how to
reintegrate into society once their role as carer came to an end, needing information on
rebuilding their lives (Dawson & Kristjanson, 2003).
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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