Information and education for informal dementia caregivers: the Age-it project

Background: While there are several studies on caregivers’ needs in general, the interest towards dementia education as a mean of support and empowerment for caregivers is more recent. This article specifically aims to explore and better understand the training needs of informal caregivers of people with dementia in Italy as to inform the development of an educational tool specifically devoted to them. Methods: Informal caregivers were recruited through key informants working in the third sector and social support organizations. Two focus groups were carried out and transcripts were coded and analysed using inductive thematic analysis. Results: The sample included a total of 19 informal caregivers of people with dementia. Three themes emerged: (1) The impact of dementia on caregivers; (2) The relevance of dementia education for caregivers and society; and (3) Caregivers’ information and education needs. The general lack of information and education about dementia from the very first diagnosis affected the chance for caregivers to be effectively supported and prevent and de-escalate caregivers’ emotional distress. Conclusion: Knowledge transfer is the most proximal effect of educational interventions and should represent part of personalized multicomponent support for caregivers throughout the dementia journey.