Experiences of loving & caring

Researchers are seeking the views of carers of people with dementia for a study about the emotions, feelings and coping mechanisms involved in caring for a loved one living with dementia.

By Keryn Curtis

The views of current and past carers of a loved one with dementia are being sought for a study being conducted by the University of the Sunshine Coast.

Psychology honours student, Amanda Axsentieff, is researcher working with chief investigator, Dr Prue Millear from the University’s psychology department, on a study called Caregiving in Dementia: Finding Positive Meaning, that aims to understand feelings of value and worth and caregiver coping mechanisms.   

Ms Axsentieff said while substantial research into the downsides of caregiving had drawn much needed understanding and attention to the challenges for those who care for someone with a debilitating illness or disability, this negative focus could be disempowering for carers.

“Recently there has been a shift to focusing on the positives that are gained through caring for someone that you love,” she said.  “This is an approach that enables the value and worth to be seen in the caregiving role.” 

According to Ms Axsentieff, the project will explore both the positive and negative side to caregiving. In particular, the study will examine the use of coping through meaning making and the effect that using this strategy has on positive outcomes. 

“We are looking for primary carers  – husbands, wives, partners, sons, daughters etc – of people with any form of dementia to be volunteers for our confidential survey about the emotions and feelings that are experienced as part of caring for a loved one living with dementia. 

“We value these experiences, whether they are current or in the past and we would like to understand how these experiences have shaped carers’ mental health and well-being as well as the reflections of past carers.

“We need as many people as possible to take part to understand how to make the most of caregiving for a loved one,” she said.

Ms Axsentieff said people who were willing to participate in the research should complete the fifteen minute confidential survey by following the link: https://www.surveymonkey.com/s/EmpoweringCarers

“Some of the questions are written with current carers in mind but for former carers, we are asking people to answer as it applied to them when they were caring for a loved one. 

“It should take approximately 15 minutes.  We don’t want people to spend too long on any particular question, but rather try to respond as quickly and easily as possible. Grab a coffee and tell it like it is!”

For further information go to: https://www.surveymonkey.com/s/EmpoweringCarers

Tags: carers, dementia-carers, research, survey, university-of-the-sunshine-coast,

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