International research to tackle exclusion and inequalities faced by people living with dementia

An international project led by the University of Stirling is to investigate how people living with dementia can be better included in decisions taken in their communities.

Led by dementia expert Dr Richard Ward, a research team including specialists from Canada, Germany and the UK will look at the benefits, challenges and outcomes of the participation of people living with dementia and unpaid carers in community development and related policy-making, provision and practice.

The team includes: Dr Ward of the University of Stirling; Professor Reimer Gronemeyer of Justus Liebig University Giessen and co-founder of the Aktion Demenz dementia-friendly communities network in Germany; Professor Alison Phinney, co-director of the Centre for Research on Personhood in Dementia at the University of British Columbia; Dr Elaine Wiersma Associate Professor and Director of the Centre for Education and Research on Aging and Health at Lakehead University, Ontario; and Professor Andrew Clark of the University of Salford.

Exclusion

Dr Richard Ward, Senior Lecturer in Dementia at the University of Stirling, said: “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 disadvantages 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.

“We want to ensure that communities are inclusive of people with conditions such as dementia and, through this project, aim to generate evidence to guide much-needed reform to community-based services and support.”

Now widely recognised as a global health challenge, an estimated 50 million people live with dementia worldwide, with that number set to rise by 152 million by 2050.

The research, which is funded by the Social Sciences and Humanities Research Council, Canada, DFG, German Research Council and UKRI’s (UK Research and Innovation) Economic and Social Research Council (ESRC), will look at the potential of ‘dementia-friendly communities and initiatives’ (DFCIs) – a movement recently introduced by WHO – to tackle exclusion, share good practice and learning on an international scale. In the long-term, researchers aim to redefine public awareness and understanding of dementia by demonstrating the significant social contribution made by people living with the condition within their communities.

Global challenges

Dr Richard Ward added: “In the wake of the pandemic, public spaces across the world are being reshaped in anticipation of other emerging global challenges, so the timing of this research is significant.

“This new study will empower people living with dementia and unpaid carers to influence these changes as we aim to 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, ‘Centring the lived experience of dementia within policy, practice and community development’, launches this month.