Preferred type, timing and format of dementia information: A cross-sectional survey of carers of people living with dementia

Objectives: To clarify the unmet information needs of carers of people living with dementia, including the stage of their care journey at which topics become relevant, and the preferred format and mode of delivery of information. Methods: A cross-sectional survey of carers of people living with dementia was conducted between April 2022 and October 2022. Carers were recruited through public and private geriatric hospital and community clinics, aged care providers, an online research register and community dementia services. Consenting carers completed a survey assessing sociodemographic characteristics, preferred type and timing of information about dementia, accessing services, changes in behaviour/personality, changes in physical/emotional health, managing own health/well-being and preferred information format and mode of delivery. Results: A total of 163 carers returned a survey (20% response rate). Most carers (75–98%) reported wanting information across a range of topics. Carers preferred general dementia information at diagnosis, information about accessing services at or within the first year of diagnosis, and information on managing symptoms as they emerged. Carers were most interested in receiving information in-person face-to-face (60% very interested), written information (51% very interested) or via face-to-face group information sessions (42% very interested). Conclusions: Carers of people living with dementia expressed a desire for information on a wide range of topics, which changed as the dementia of the person they cared for progressed. Information needs to be made available in a variety of formats to cater for differing ways in which it is consumed.