The demographic changes and the epidemiological patterns Lithuania is facing are indicative of a looming crisis, as the number of people living with dementia will increase significantly. Yet dementia is not currently a public health priority in Lithuania. Dementia-related services are concentrated around clinical aspects of the condition, while social care and support are highly fragmented. Dementia carer communities are scarce and inactive as a result of the shame and stigma related with dementia in public life. In 2021, I teamed up a group of professionals and we founded a legal body Dementia Lithuania to represent people living with dementia and their carers at policymaking level. This organization will fill the leadership gap in the development of dementia-friendly policies and support cross-disciplinary partnerships creation and emergence of post-diagnostic dementia care and support services in communities.
The aim of this pilot is to counteract limited awareness of Alzheimer’s and dementia in Lithuania by strengthening the carers community and increasing their visibility through a creative arts project aligned with Person Public Involvement (PPI) research, then sharing the findings of this process. We will implement a participatory photography practice, “Photovoice” (workshops, individual practice, group exchange), observation, and interviews with carers in Lithuania. The participants will co-develop the framework of the project and take part in all stages of project implementation — photography training, fieldwork gathering visual data, discussion sessions, dissemination of the project results, and evaluation. The qualitative data will be analyzed using thematic analysis. Ethical approval will be obtained. The project aims to:
- Strengthen cross-disciplinary partnerships in the sector of dementia care;
- Have a positive impact on carer well-being, strengthening the sense of community and belonging amongst carers;
- Create a network, an active carer community, with the tools, support and potential to become advocates for carer rights and needs in Lithuania; and
- Contribute to raising dementia care awareness in Lithuania through the promotion of its outputs.
The artistic results will be presented to the public and policy makers, to foster wider discussion about how public services and policies could better support people living with dementia, their carers, and family members in Lithuania.