Building a Virtual Community of Practice for Family and Friend Caregivers of People Living With Dementia: A Mixed-Methods Study.

INTRODUCTION

Over 55 million people worldwide live with dementia, placing significant demands on family and friend caregivers. These demands lead to stress, depression, and social isolation. Caregivers report unmet needs such as access to resources, education, and emotional support. A Virtual Community of Practice (VCoP) offers a promising solution by fostering shared learning, emotional support, and practical caregiving strategies.

OBJECTIVES

This study explored the (a) perceptions of caregivers and a person living with dementia of the VCoP (b) recommendations of caregivers and a person living with dementia to improve the VCoP and (c) experiences of caregivers and a person living with dementia in co-designing the VCoP.

METHODS

Using a mixed-method sequential explanatory approach, ten research partners (nine caregivers and one person with dementia) participated in two virtual workshops and follow-up interviews. Survey data were collected via the System Usability Scale (SUS) and Patient and Public Engagement Evaluation Tool (PPEET). Survey data were analyzed using descriptive statistics. Thematic analysis of workshop and interview data was conducted.

RESULTS

The VCoP achieved an SUS score of 94.5, indicating excellent usability. PPEET results showed high satisfaction with engagement in development. A total of eight themes were developed. Thematic analysis highlighted strengths such as ease of locating information on the website, practical content, and opportunities for sharing and learning through discussion forums. Recommendations included improving accessibility, tailoring activities to life stories, and ensuring activities maintain normalcy. Research partners felt included and supported during the workshops, enjoyed the small group atmosphere, and appreciated seeing their ideas reflected in the final product.

CONCLUSIONS

The VCoP was perceived as practical for supporting caregivers. Involving people with lived experience ensured the intervention met caregiver needs. Findings underscore the importance of VCoPs and the value of co-design in creating effective caregiver support tools.