Background: Dementia poses a significant public health challenge, with existing support services primarily tailored for prevalent forms of dementia. In response, the World Health Organisation developed iSupport, an online support programme designed to be culturally and linguistically adaptable, thus targeting diverse carer populations.
However, there is a large, well- documented gap in support for people with rare dementias and their carers. This thesis aimed to adapt the iSupport programme for carers of people with rare dementias (iSupport RDC) and test the feasibility and acceptability of this new version.
Methods: This project was divided into three stages, (1) An umbrella review to identify the elements of online interventions for carers of people with dementia that make them effective, (2) The adaptation of iSupport for rare dementias based on feedback from carers and healthcare professionals who have experience with rare dementias. Participants were asked to suggest any changes that could make iSupport more suitable for carers of people with rare dementias. (3) A feasibility study looking at the feasibility of measures, the feasibility of recruitment and the acceptability of the adapted version of iSupport RDC.
Results: The findings from the umbrella review (1) suggest that effective interventions use psychotherapy, psychoeducation and social elements to support carers. Personalising interventions to different situations and carer subgroups was also important. However, several of the systematic review studies in the umbrella review included the same studies, potentially confounding the findings. The adaptation study (2) found that most of the suggested adaptations were on the content of iSupport to demonstrate the different symptoms and age of onset for people diagnosed with rare dementias. Other adaptations included the presentation which was seen as patronising in places and the context, focusing on different relationships to the person with dementia and making the advice more person-centred. The feasibility study (3) found that the measures would be feasible on a larger scale, but that recruitment should focus on diversifying the education level and ethnicity of participants to increase the generalisability of the findings. Participants responded positively to the iSupport RDC programme and its relevance, however several participants withdrew from the study due to IT related problems with the iSupport platform.
Conclusions: iSupport RDC has the potential to be adapted to other cultures and languages to reach carers all over the globe. It has demonstrated feasibility and acceptability for testing on a larger scale and participants in both the adaptation study and the feasibility study expressed a need for this resource to support carers that may not be able to find this information otherwise. Aligned with NICE guidelines advocating for tailored psychoeducation and skills training, iSupport RDC emerges as a promising avenue to address existing gaps for carers in this specific context. Future studies should focus on refining the platform, mitigating technical challenges, and assessing cross-cultural applicability and testing its effectiveness.