What are the educational and support needs of family carers looking after someone in the early stages of Alzheimer's disease? A qualitative retrospective approach.

Abstract

The current study aimed to identify the educational and support needs of family carers of people with dementia in the early stages of dementia by employing a qualitative approach with retrospective semi-structured interviews with family carers of people in the later stages of Alzheimer's disease (AD). Semi-structured individual interviews were conducted via telephone or Microsoft Teams video call. Purposive sampling was used to recruit twelve family carers of people with moderate or severe AD. An interview guide was used to explore the retrospective views of the carer's educational and support needs in the early stages of AD. The interviews were audio-recorded transcribed and analysed using thematic analysis. Three overarching themes were identified. Theme 1 highlighted that family carers experienced frequent and overwhelming need to fulfil a family obligation and feelings of guilt to seek help, which acted as barriers to seeking support, in the early stages. In theme 2, family carers rarely received support in the early stages and available resources were limited to self-help materials. Finally, in Theme 3, family carers wanted to receive interpersonal tailored support to seek practical advice and to learn psychological skills to build resilience in the early stages to overcome emotional challenges. The development of interventions that are specifically designed for family carers in the early stages is critical. The key components to be considered for future interventions are discussed.