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Capturing the stories of those caring for loved ones with dementia

Dementia_Grant helping dad

Our annual fundraising appeal for the Wicking Dementia Centre has launched, focussing on a personal story that highlights the need for more support for those living with dementia and their caregivers.

Rowena Howard cares for her father, Roger, who has dementia, on a farm in the Tasmanian Midlands.

Rowena completed the Wicking Dementia Centre’s Massive Open Online Courses (MOOCs) – Understanding Dementia and Preventing Dementia – to assure herself that she was doing everything she could for her father.

“I found welcome relief listening to the filmed conversations between care givers, nurses and scientists,” Rowena said. “I felt like I was sitting in on a conversation with like-minded people even though I was tucked away remotely on our farm.”

“I wanted to share our experience for several reasons...It just may help your own family by knowing those stories or at least by helping someone else discover theirs.”

A new University of Tasmania research project, “Sharing is Caring”, led by the School of Nursing and the Wicking Dementia Research and Education Centre, is compiling similarly powerful and authentic stories of family members caring for a loved one living with dementia, and how these carers respond to and experience the shift.

Researchers met with sole carers in New South Wales and Tasmania over a seven-month period to co-design a written narrative about their caregiving experiences, and video record their reflections on their role as a carer.

“It’s an extremely personal experience for someone to be caring for a loved one with dementia,” Dr Sharon Andrews (BNurs Hons 2002, PhD 2010) from the University’s School of Nursing said.

“Carers can have a mixture of experiences which can be isolating, challenging and rewarding and we wanted to capture a carer’s thoughts and reflections in their own words."

Dr Andrews’ career spans nearly two decades, having been involved with the ageing and aged care sector as a researcher and registered nurse.

Dementia is fast becoming known as the public health concern of the 21st Century, with the number of people with dementia across the world increasing every year.

“We also wanted to understand how telling stories can help carers find meaning in their role and what we started to see as these stories developed was how the ordinary becomes extraordinary,” Dr Andrews said.

“Those events or interactions that were once taken for granted by the caregivers, as just everyday ordinary events, like the person with dementia saying ‘I love you’ or sharing a joke with the carer, become much more extraordinary events as the person’s dementia progresses.”

Dr Andrews found documenting a carer’s story and experiences also helped to create a broader understanding for extended family members.

“The power of these three stories is that they provide a small window into the nuance of everyday experiences of caring for a family member which even other family members of that family may not have access to," she said.

“The son of one of the caregivers emailed me after he watched the video to say thank you, and how grateful he was that we had captured his parents’ story. His mother was living with dementia, and his father was caring for her. The son said the story provided special insights about his father as a caregiver, and his parents' relationship - insights which he would not have otherwise had.”

Stories and videos from the Sharing is Caring project are available at Sharing is Caring.

Dr Andrews was joined by Professor Fran McInerney and Dr Helen Courtney-Pratt from the University’s Wicking Dementia Research and Education Centre for the project.

The initiative was funded by the University’s Community Engagement Scheme and conducted in partnership with Clarence City Council (Tasmania) and Kiama Municipal Council (New South Wales).

To donate to the Wicking Dementia Research and Education Centre please click here.

Image credits: Rowena Howard

This article featured in the monthly eNews Alumni and Friends, if you are a member of the University of Tasmania alumni community and would like to receive this publication, please email us at or update your email address.

Published on: 13 Oct 2021 5:31pm