Above: Photo taken in 2002 of Dr Siobhan O’Dwyer (in her 20s) at her first university graduation with her grandfather, Max Gericke, who she cared for.

By Yasmin Noone

Researchers from Griffith University (Queensland) are calling on aged and community care workers across the country to help them recruit 1,500 volunteers for a new study into the health and wellbeing of people who care for adults living with dementia.

The study, which commenced earlier this year, aims to derive information about the physical, psychological, social, financial and emotional effects of caring for a person with dementia and then pinpoint the reason why some carers cope with the experience and others do not.

Post-doctorate research fellow at Griffith University, Dr Siobhan O’Dwyer, said the study’s results will most likely be used to recommend what is lacking in the provision of carer support services.

“The estimated value of unpaid care provided by family and friends is about $250 billion," said Dr O’Dwyer.

“Family carers do a huge job that saves us, as a society, a huge amount of money.

"But carers often struggle...We know [caring] has a huge effect on a person’s physical and mental health."

Dr O’Dwyer said that recent studies estimate that up to 70 per cent of carers experience depression, while one in four has an anxiety disorder. 

"On top of that they are watching the person they love slip away in tiny increments.

“The key thing for us is the question – what makes a carer resilient?

“I’ve met carers [who have been through tough times] that would leave me in a corner sucking my thumb. But they continue get up the next morning and keep on going. So what is the difference between the carers that cope and the ones who struggle?

“If we can identify that, we might be able to better target the services we provide to carers who are struggling.”

Research participants are required to fill out a one-off anonymous survey – either online or in hard copy – about type of care or support they provide, their health, and emotional wellbeing.

Volunteers must be (or have been) the main provider of care for a family member, friend or spouse with dementia. They can either be caring for a person who is living in the community; has moved into residential care but was previously cared for at home; or was being cared for at home before they died.

“The survey can be anonymous and a ‘safe place’ where carers can share things they might not be comfortable talking about with their GP or medical professional, especially if they’ve got thoughts about harming themselves or the person with dementia.

“These are common things but people don’t think it is safe to talk about.”

Survey questions will yield information about the carers and person with dementia’s background (location, sexuality, marital status); the type of care provided to the person living with dementia; the services received; impact the care is having on the carer’s physical and mental health and the nature of the relationship between the carer and care recipient.

Dr O'Dwyer commented that although previous research has been conducted which looks into carer-related issues, this study rates as the first of its kind.

“There has been a lot of work on carer burnout but the research has been really quite negative.

“…What we are trying to focus on is the fact that carers don’t really look [at their caring responsibilities] like that. They care, willingly, because they love the person they are caring for.

“This research is about finding ways to support them and to help make the experience of caring as positive as we can.”

Dr O'Dwyer urged aged and community care staff  to encourage the unpaid carers they are in contact with to take part in the research.

"Carers often let their own care slip. The biggest thing we can do  for them is to support them to have that time out for themselves.

“It’s important for staff to say ‘hey you are doing a good job’ and encourage them to do bit of self-care.

“Encouraging carers to do that that would make the world of difference.”

The research team will continue to recruit participants until the end of the year.

To be sent a hard copy of the survey, contact Dr O'Dwyer on s.odwyer@griffith.edu.au or (07) 3735 6619.

To complete the survey online, visit https://prodsurvey.rcs.griffith.edu.au/dementiacaresurvey
 

For help with or advice on depression, contact the Black Dog Institute by clicking here

For help in a crisis, contact Lifeline by calling 13 11 14. For more information about the organisation, click here.