July 7, 2016
Vision researchers from The Westmead Institute for Medical Research have been awarded a new NHMRC partnership grant to enhance caregiver services for family carers of people living with age-related macular degeneration (AMD).
AMD is the leading cause of blindness in Australia. Approximately one in seven Australians over 50 – or one million people – have some evidence of macular degeneration.
Despite informal carers providing 1.9 billion hours of care in 2015, Australian data shows that nearly two out of three informal carers are not accessing caregiver support services.
The new research project, run in partnership with Macular Disease Foundation Australia (MDFA) and Carers NSW, aims to enhance the health and wellbeing of family carers by improving the design and delivery of existing support services and programs.
According to the study’s chief investigator, Associate Professor Bamini Gopinath from the Institute’s Centre for Vision Research, caring for loved ones with vision loss can be burdensome and often leaves carers exhausted and at risk of health problems.
“There is a lot of data that points to caregivers as ‘hidden patients’, at risk of poor outcomes,” Associate Professor Gopinath said.
“In our previous study in collaboration with the MDFA we found a higher than expected prevalence of emotional distress including feeling sad, frustrated and/or isolated among family carers of persons with late AMD. This finding underscored the difficulty of coping with the challenges related to assisting persons with late AMD.”
The project will be supported by almost $440,000 of funding over three years from the NHMRC, MDFA and Carers NSW. It will include a telephone support group, a cognitive behaviour therapy program, and information about other available carer resources and support.
The researchers will then evaluate the health and social outcomes, and the costs of running this intervention over a 12-month follow-up period.
“This intervention has potential to be a valuable addition to existing caregiver services, by reducing the burden and distress among family carers of people with AMD, leading to improvements in their overall wellbeing,” Associate Professor Gopinath said.