LivEDem: Centring the Lived Experience of Dementia within Policy, Practice and Community Development

• Applicant: Professor Dr. Reimer Gronemeyer
• Subject Area: Empirical Social Research ; Classical, Roman, Christian and Islamic Archaeology
• Term: since 2022
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 503002836

Dementia is now widely recognised as a global health challenge. An estimated 50 million people are currently living with dementia worldwide and this number is estimated to reach 82 million in 2030, and 152 million by 2050. Approximately two thirds of people with dementia live in the community, and this overall percentage is rising as care and support adopts a community focus in many parts of the world. Yet, people with dementia have been excluded from participating in their communities and historically have been overlooked by policy-making, planning, design and service provision. The recent pandemic has shed light on this exclusion, showing that people living with dementia face disadvantage when accessing health and social care services. Indeed, around the world, people with dementia have been afforded little influence over the handling of the crisis or its subsequent impact upon their care and support. The introduction of an international agenda for ‘dementia-friendly communities and initiatives’ (DFCIs) holds out potential for tackling these inequalities and better supporting people with dementia to actively participate in their local communities. As such, this proposal will explore how DFCIs can tackle exclusion while supporting people living with dementia to have their say within their communities. We recognize that the DFCI movement is at an early stage of its development, so our research will create the foundation for an evidence-informed international network of DFCIs promoting co-ordination and communication. Our international team is drawn from three countries (Canada, Germany, and UK) and proposes to deliver a programme of in-depth social science research that will investigate how the diverse experiences of living with dementia can help create inclusive communities. The timing is important as many nations and regions begin to rethink how public spaces are used and organized in the wake of the pandemic and in anticipation of other emerging global challenges. The proposed research will empower people living with dementia and unpaid carers to influence these changes. We will generate learning about the most effective and supportive ways that people with dementia can be involved in policy-making, planning and commissioning at the community level. The research will tackle social isolation, building connections between networks of people with dementia, locally and globally. In the longer-term we aim to redefine public awareness and understanding of dementia by demonstrating the significant social contribution made by people living with dementia within their communities. We want to ensure that communities are inclusive of people with conditions such as dementia and we will generate evidence to guide much-needed reform to community-based services and support. Ultimately, the research will inform a broader agenda for creating communities that can withstand potential future threats, becoming more resilient and equitable.

• DFG Programme: Research Grants
• International Connection: Canada, United Kingdom
• Cooperation Partners: Alison Phinney, Ph.D.; Richard Ward, Ph.D.