Content Analysis of Free Online Information and Support Available to Young Dementia Carers Across Europe

The aim of this study was to gain insight into young dementia carer-specific content provided on the websites of dementia and (young) carers organizations in seven European countries including: the UK, the Netherlands, Italy, Greece, Portugal, Ireland and Sweden. Research questions were: 1). What types of young dementia carer-specific content are available on national websites of dementia and (young) carers organizations across Europe? and 2). How does the content address the complex impact that dementia can have on young dementia carers? The identification of websites was informed by the contextual characteristics of each country in relation to dementia and young carers support and services. A standard protocol describing the website inclusion and exclusion criteria, data extraction and content analysis using a categorical coding framework was followed. Descriptive statistics were calculated to summarize data within and across countries. A total of 312 organizations with active websites meeting the eligibility criteria across countries were identified, and their websites reviewed. Content relevant to young dementia carers was identified in 28% (n = 86) of the websites, with uneven availability of resources across Europe and very limited resources in some countries. Most contents addressed five categories: Diagnosis & symptoms, Uncertainty & family distress, Changes in roles, Stigma & isolation and Identifying need for support. A lack of tailored resources to support young dementia carers was identified, particularly in relation to two categories: Grief & loss and Education & life planning. Only a minority of websites included young dementia carer-specific content. These websites primarily focused on general support needs and explanations of dementia, while key areas such as guidance on school, career, and life planning remain underdeveloped. There is a need for greater recognition of young dementia carers, clearer terminology, and more developmentally appropriate and practically oriented resources to strengthen online support for these carers across Europe.