4 March 2021

Research news

Researchers at the National Ageing Research Institute (NARI) will develop an audio-visual resource that counters negative portrayals of caring for someone with dementia, after being awarded a $75,000 Dementia Australia Research Foundation Pilot Grant.

The study: Creative Caring: Promoting a balanced view of caring for someone with dementia,
aims to work with family carers to co-design a multi-media resource that reflects the full diversity of experience of caring and living with dementia.

The resource will be suitable for the general public, and go some way towards countering overly negative portrayals of the dementia caregiving experience.

Reflecting the principals of carer engagement, our Project Advisory Group will be chaired by carers Anne Fairhill and Catherine Roth, OAM.  NARI’s Dr Kirsten Moore will lead the project. 

Dr Moore said caring for a family member or friend living with dementia is often portrayed negatively, focusing on depression, burden and chronic stress, but this is not the full picture.

“Not everybody struggles with being a carer, and not everything about the role is stressful and difficult,” said Dr Moore. “Our research is trying to show caring in a more positive light for the benefit of prospective carers and those embarking on their caring journey.”

“Most carers can identify at least one positive aspect of caregiving and many in turn describe caregiving as an emotionally rewarding experience, as well as one of growth.”

“An important part of the project is identifying strategies for how people do adapt and grow from this role,” said Dr Moore. “Some people really benefit from being able to learn and use different skills, have a different role in their life, develop closer connection and bond with the person they’re caring for. Some people find lots of positives about it.”

“We believe this project will help alleviate some of the distress associated with future caregiving caused by overwhelmingly negative portrayals.”

The research project is a qualitative co-design study involving carers of people living with dementia throughout, including qualitative interviews and workshops to identify the messages that carers want to promote to other carers.

Carers will be asked to share their stories of positive and negative aspects of caring, and the creative ways they manage daily stressors and challenges.

Dr Moore said qualitative interviews, and encouraging storytelling by carers, will elucidate and provide rich examples of how carers regularly employ such strategies to powerful effect.

“We are trying to change that image of dementia being one of the most feared things for older people. We might not be able to change dementia, but we can change the circumstances under which people are providing care for people with dementia.”

The project is expected to be completed by mid-2022, with the resource available to the general public.