Wednesday 28 September 2022

Media Release

In 2022, almost 1.6 million people in Australia are involved in the care of someone living with dementia. These carers are often family members — children, spouses, or parents — of those diagnosed.

The National Ageing Research Institute (NARI) will today launch a new video resource, Finding My Way: Sharing tips on supporting people living with dementia, aimed at sharing the experiences of family carers for people living with dementia, including the challenging, positive, and rewarding aspects of caring.

Developed as part of the ‘Creative Caring’ study, the Finding My Way video was co-designed with family carers, through the guidance of a project advisory group, to portray the many facets of being a carer and challenge the negative stereotypes that surround the responsibility.

Dementia impacts over 400, 000 Australians, and approximately 65 per cent of people with dementia live at home – either independently or with the support of a carer.

Head of the ‘Creative Caring’ project, NARI Associate Professor Kirsten Moore, said the short film documents how varied the carer journey can be, as well as the strength, resilience, and compassion of those who give their time to support people living with dementia.

“Many individuals assume the role of carer unexpectedly, when a loved one’s condition worsens. And whilst there is no instruction manual for being a carer, this video is able to offer words of advice and encouragement for those who are taking on this role,” Associate Professor Moore said.

The video aims to provide insight into the experience of caring, whilst countering many of the overly negative portrayals and assumptions of the dementia caring experience.

“Carers can feel isolated in this role, so we wanted to highlight that there is no one way of caring, nor is there any single experience of dementia,” Associate Professor Moore said.

“Many of the participants spoke to a feeling of judgement from friends or family who didn’t understand the experience of caring for someone with dementia. It’s important for those of us on the outside to offer our support without judgement or assumption.”

Whilst this video was made with and for family carers, it is also crucial for those who do not have experience with caring to reframe the stigmas, and offer a greater understanding of the compassion and generosity of the many Australians who take on this role.

“What a brilliant resource this will be for anyone who is starting, or travelling, along the carer journey, as well as being a magnificent means of showing those who are not on that journey its challenges and its joys. This timeless resource will be one of both reassurance and information for so many,” Finding My Way carer advisor Cathy Roth OAM said. 

Ten family carers (8 current; 2 bereaved) aged between 50 and 80 years old, who had cared for a person living with dementia participated by sharing their own stories and insights.

“…At the heart of the video are the wonderful carers who generously and courageously shared their stories and experiences. They are all great on screen, articulate, honest and so willing to share their experiences, as well as respectful, compassionate and insightful about their loved ones living with dementia. They are wonderful role models.” Finding My Way carer advisor Elizabeth Sanchez said.

NARI is focused on developing person-centred research and resources, and Executive Director Professor Briony Dow says amplifying the voices of carers is a vital part of this.

“The rhetoric around caregiving is often solely focused on the difficulties carers face, but this video also showcases a different side of the experience. Participants revealed how rewarding and fulfilling caregiving has been, which will be an empowering thing for other carers to see,” Professor Dow said.

This video is an important resource to highlight the voices and experiences of family carers, changing the narrative of caring by addressing its challenges, and sharing the joy that can come from supporting someone living with dementia.

The Creative Caring project was supported by funding from the Dementia Australia Research Foundation, and the former Dementia Centre for Research Collaboration.

The online launch of Finding My Way: Sharing tips on supporting people living with dementia will be held via Zoom today, Wednesday 28 September, at 1pm. To attend, register here.

To access the video, and further information, visit www.nari.net.au/finding-my-way

Associate Professor Kirsten Moore is available for interview.

Media Contact: Olivia Joyce – 0448 129 595