Published on: October 14, 2020
My journey into a PhD at QUT started with conversations with partners of people with dementia. They talked about how difficult the transition into residential care was for them, and their partner with dementia.
Some of these couples had been married for fifty or sixty years, and the separation was often referred to as a ‘bereavement without death’- which became the title of my thesis.
I was struck by the lack of formal emotional and psychological support people received during and following this transition and I wanted to investigate how we could improve support for people who were struggling to cope.
Spouses and family carers often find it difficult to seek and access psychosocial support during such a stressful transitional period. If these needs are not met, they may continue to experience negative outcomes, such as feelings of stress, grief, guilt, loneliness and depression.
My research identified a range of supportive services that could be offered to carers during and following placement, including psychosocial interventions such as the Residential Care Transition Module, developed in the US by Professor Joseph Gaugler and colleagues.
For me, research is about trying to make a positive difference to people’s lives. I’m so grateful to the residential care staff and spousal carers who agreed to take part in my research.
I hope my research improves the quality of care and support that people with dementia and their families receive across the whole dementia trajectory; from diagnosis and living well with dementia at home, to possible residential care placement and end-of-life care.
People who are caring for someone with cognitive decline need to be kind to themselves and reach out to family, friends or professionals for help and support.
Dementia Australia is a good place to start as they provide information, advice, support, and dementia-specific counselling for carers. Support from other carers who’ve had similar experiences and feelings can be really helpful too – either via a support group or an informal chat over coffee. Talk to your GP if you’re feeling depressed. Talk to residential care staff about how you can work together to help your partner settle into the facility and how you may also need some time and support to adjust.
If you or a family member is struggling with a dementia diagnosis, Dementia Australia has a series of factsheets to help people with dementia, their families and care staff: https://www.dementia.org.au/resources/help-sheets
Dr Deborah Brooks completed her PhD with Professor Elizabeth Beattie (QUT), Dr Elaine Fielding (QUT), and Professor Helen Edwards (QUT) and Professor Joseph Gaugler (University of Minnesota). Deborah is currently working with Dementia Training Australia (DTA) to help develop a program that builds expertise and capacity around the assessment and management of responsive behaviours within residential aged care facilities.