When someone with dementia goes missing, what happens next?
For a person living with dementia, becoming lost can be a frightening and disorienting experience.
For their family, friends and carers - it can trigger hours of uncertainty, fear and searching.
Now, CQUniversity researchers are seeking to better understand what happens when people living with dementia become lost – and what can be done to help understand lost events for people living with dementia and reduce trauma.
The research project, led by CQU project manager Dr Steven Schwartz, is exploring the experiences of people living with dementia who have become lost and subsequently been found.
Dr Schwartz brings his experience and expertise in search and rescue to the project, and he is supported by a team of multidisciplinary researchers, with expertise in dementia, health research, marginalised communities and technological solutions.
People with lived experience of dementia have also contributed to the project’s development.
Dr Schwartz said the research aimed to understand the factors that contribute to someone becoming lost, as well as what happens during the process of being found.
“Becoming lost can be a distressing experience for the person living with dementia, and it can also have a profound impact on the people around them,” Dr Schwartz said.
“We want to hear directly from people who have experienced this, as well as their care partners and loved ones, to understand what was happening before, during and after the person became lost.
“By understanding these experiences, we hope to identify factors that could help improve the experience for everyone involved when it does happen.”
The research is particularly focused on rural, regional and remote Australia, where distance, terrain, limited services and other factors can create additional challenges when someone becomes lost.
Importantly, researchers want to hear from people living with dementia themselves to ensure that their voices are included in this research.
Participants living with dementia who have previously become lost will be invited to take part in a 45 to 60-minute interview with a researcher. Interviews can be conducted remotely via videoconference or in person where accessible, and participants are welcome to have a care partner or loved one join them.
Care partners and significant others who have experienced a loved one with dementia becoming lost are invited to complete an online survey, with the option of taking part in a follow-up telephone or videoconference discussion.
Dr Schwartz said the experiences of those directly involved were essential to understanding the issue.
“There is a lot we can learn from research and statistics, but there is no substitute for hearing from the people who have actually lived through these experiences,” he said.
“We want to hear directly from people living with dementia who have experienced thisbeing lost, as well as their carers and loved ones, to understand what was happening before, during and after the person became lost.”
People living with dementia who have previously become lost and would like to participate in an interview can contact Dr Schwartz via [email protected].
Care partners and significant others can participate in the online survey at CQUniversity dementia research survey.
