Caring takes its toll

By Stephen Easton

The “ironic tragedy” of caring for a spouse with dementia is that the stressful role can increase the carer’s own risk of cognitive decline, according to researchers from the US.

The results of a literature review, published in the May issue of the Journal of the American Geriatrics Society, show that people who care for their spouse with dementia are at higher risk of dementia than non-caregiver spouses from similar backgrounds.

The researchers found that, much like other stressful occupations, caring for a spouse with dementia makes it difficult to look after one’s own health, by maintaining a healthy diet and sleeping patterns, finding the time to exercise and maintaining social contact. 

According to Dr Chris Hatherly, project manager of Alzheimer’s Australia’s National Dementia Quality Care Initiative, a report by Access Economics estimated that in 2008, 165,000 Australians were in this position as caregivers for people with dementia.

“That’s over 200 million hours of unpaid full time care,” he said. “That’s per year, and that averages out to be about 1,200 hours per person, or 150 eight-hour days per caregiver. We’ve also got an estimate of the value of that care; it’s basically saving the government 5.5 billion dollars a year [through] not having to provide those services.”

“Another recent study showed about one-third of people with dementia receive no formal care at all, so they’re totally reliant on their spouse or caregiver.”

Dr Hatherly listed a range of services available to caregivers through Alzheimer’s Australia and its state branches, funded by the federal government’s National Dementia Support Program, including carer support groups, the Living with Memory Loss program for people dealing with the early stages of dementia and the 24-hour National Dementia Helpline (1800 100 500).

And, he said, a range of technological aids could also ease the burden on carers of people with dementia, such as lifters to help with getting in and out of beds, chairs and cars, or bidet attachments to make using the toilet easier.

The main service available to give carers the chance to look after their own needs is respite care, which can provide some much needed stress relief and personal time, but the Alzheimer’s Australia project director said it could not help in all situations.

“Some carers tell us that putting the person into respite for a few days means they come back upset and confused, and they spend the next two or three days calming them down, so [for those carers] it’s not really worth the effort for one day’s break. In many cases it is a helpful service but in some isolated cases, for example, people might have to drive two hours each way. Again, for maybe six hours of respite.

“[While] the government can always do more … they could also give more recognition that there are so many people out their doing such a huge volume of unpaid work.

“Many are spouses, but many are also younger people who have to give up work to take up those roles and then might find themselves in a range of other difficult situations with work and family.”