Carers co-design new dementia care approach

To find new ways of supporting family caregivers, Bolton Clarke Research Institute’s Mind the Gap! Project is working with people living with dementia and their carers to co-design a new approach to day respite, short-term residential respite care and transition into permanent care.

BCRI Research Fellow Dr Claudia Meyer said the project, funded under the Dementia Australia Research Foundation, is exploring respite and transition approaches that better meet the needs of people with dementia and their carers.

“People living with dementia often have specific care needs that are provided mostly by informal carers like family or friends,” she said.

“There may come a time when the physical or emotional demands of caregiving are no longer manageable, which is why supportive residential respite care is important, with or without a transition to permanent care.”

Dr Meyer said the transition of a person living with dementia to permanent care could be laden with guilt and confusion for carers and that individual experiences could vary widely.

“Often people come to aged care through the hospital system, and that is a really stressful time for everyone. There’s a lot of confusion for the person with dementia and a lot of grief and stress that goes on for the family at that time,” she said.

“All the little things are so important and help take a bit of pressure off the carers. We are looking at a new model of care so we can have people who are already coming for respite and are familiar with the community, making the transition easier when full-time care is needed.”

Advocate Ron Sinclair cared for his wife after she developed symptoms of early onset dementia from her mid-40’s. He is part of the project team for Mind the Gap! and says that research like this will start a conversation between carers of people with dementia and service providers to find a person-centred solution.

“I wanted to be involved in the project because one of the main issues I struggled with when I was looking after my wife was finding some form of respite that met her wants and needs. There were things out there where people made decisions about what they thought people with dementia needed but there was nothing that tried to find out what she was like as a person.” he said.

“Some people think that when you’ve met one person with dementia, you’ve met all people with dementia. But there can’t just be one solution that meets everyone’s wants and needs. There needs to be a flexibility and understanding in how to make somebody happy, to promote their wellbeing,”

“My experience with Dr Meyer and the project has been really positive because she understands the importance of looking at what the person with dementia requires and what the carer needs and trying to educate people on how to better provide that. There needs to be communication like this, so that people don’t go through what we went through.”