Formation of carer mutual support network after meeting online: lessons learned from a remote dementia support programme delivered by volunteers

Abstract

<p>Aims: Mutual support network is a valuable asset for informal carers in the community. With the aid of information and communication technology (ICT), it becomes easier to connect carers online. However, little is known about whether these networks can translate into face-to-face interactions and continue for longer term. This study aims to examine the feasibility of a remote dementia support service using ICT for forming carer mutual support network and its impact on carer wellbeing. Methods: The service (‘BrainLive’) was developed and piloted with people living with dementia and their informal carers in Hong Kong. Informal carers, in groups of three, participated in an online multicomponent carer support group hosted by a trained young-old volunteer (age > 50) for 9 months. Using mixed methods approach, data were collected through pre- and post-assessments, and postprogramme in-depth interviews. Results: Among 180 informal carers (78% women; age = 63.0±13.5; education = 11.4±4.9 years), 70% met face-to-face for social gatherings when the pandemic was less severe. For their long-term connection, 89% kept in contact after service completion. Most of the carers stayed in the chat group they formed with the volunteer and the other two families. They would share useful resources and information, and continued to meet online occasionally. Carers also showed improvements in their healthrelated quality of life (mean difference = 0.027±0.16), p<.05) in 9 months, level of distress caused by BPSD (mean difference = 1.54±6.68, p<.01), and their ICT literacy (mean difference = 3.01±8.78, p<.001) in 9 weeks. Conclusion: With optimal support, sufficient service duration, and aligned expectations, support network formed online can be translated into carer’s daily lives and sustained beyond time-limited intervention. Following the productive ageing approach, young-old volunteers might assume a larger role in forming carer support networks in the community.<br></p>