Empowering carers for shared decision-making

Carers want support to access to knowledge on how to safely manage medication and engage in treatment decisions, writes Dr Mouna Sawan.

Carers want support to access to knowledge on how to safely manage medication and engage in treatment decisions, writes Dr Mouna Sawan.

This month’s World Alzheimer’s Day – observed on 21 September during World Alzheimer’s Month – has highlighted the growing lack of recognition and support of carers. Currently, 487,500 Australians are living with dementia, and by 2058, this number is projected to reach 1.1 million.

Most people diagnosed with dementia live in the community and rely on carer support. Currently, over 500,000 individuals provide paid care for someone living with dementia, primarily women offering over 60 hours of care per week.

Dr Mouna Sawan

These carers play a significant role in managing health conditions, help the person take medications correctly and communicate and coordinate care with other family members and healthcare providers, saving the government substantial resources.

Carers should be considered as partners in the provision of health care, acknowledging the unique knowledge and experience of carers.

Our research has shown that, currently, people with dementia and their carers have significant unmet information needs regarding medication management, and they often receive inadequate information and have limited opportunity to discuss treatment options and advocate during interactions with healthcare providers.

The Carer Recognition Act 2010 states that it is “intended to increase recognition and consideration of carers and drive much-needed cultural and attitudinal change throughout Australian Public Service agencies and associated providers, and as a result, the community as a whole.”

This highlights the need for practical actions to translate the principles of the Carer Recognition Act into meaningful support for carers in Australia.

Practical actions include the carers knowing their rights and be provided with support on how they can be involved in discussions with healthcare providers about treatment decisions if they wish to.

In my research, I found that carers want access to knowledge on how to safely manage medication but feel that they are not supported and want to be engaged in decisions but don’t know what questions to ask.

Funded by the Dementia Australia Research Fund and the Australian Government’s Medical Research Future Fund, we are currently working on co-designing resources to empower people with dementia and carers in shared decision-making and to provide meaningful advice in managing the medication of the person they care for across care settings.

It is important that we develop resources using co-design with people with dementia and carers to be used during their interactions with healthcare providers to ensure they are confident to managing medications safely.

If you are interested in hearing more about this research, please email me at mouna.sawan@sydney.edu.au

Dr Mouna Sawan is an early career research fellow in medication safety and dementia at University of Sydney

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