Background: Caring for a relative with dementia places great demands on the carer and can result in the person with dementia being placed in residential care prematurely if the carer can no longer manage. It is imperative therefore that the educational and support needs of carers are considered so that effective strategies are in place to support the carer. Aim: To explore what carers caring for a relative with dementia need to know and be able to do.
Methods: A qualitative interpretive descriptive design based on the work of Thorne was used. The data was collected via semi structured interviews with 28 carers and 15 experts in dementia guided by an interview guide. The constant comparative technique was used to analyse the data and the criteria outlined by Lincoln and Guba (1985) were employed to ensure the rigor of the study. Ethical approval was obtained from the University research Ethics Committee.
Results: The analysis revealed a number of themes under which to discuss the experiences of family carers. These themes include: care for me to care for you, supporting me and learning from you, understanding dementia, knowing the way to do it, putting the house in order, staying connected. Carers reported that they were struggling, caring for me to care for you describes the need for carers to stay well and the strategies that can be used. Putting the house in order focuses on the legal and financial issues and what can be done to help and understanding dementia focused on a range of knowledge needs from knowing what dementia is to strategies to manage challenging behaviours. Learning from other carers emerged as particularly valuable.
Conclusions: Providing support, information and knowledge are essential to the carer and the person with dementia in order for both to live well. Focusing on the priorities of the carer provides the best chance of ensuring that education is meaningfu