Inclusive Engagement in Dementia Care

Inclusive engagement in dementia care encompasses the active participation of people living with dementia, their families and care partners, and wider communities in decisions that affect their well-being and quality of life. It moves beyond tokenistic consultation to embrace genuine co-production of services, research and interventions, recognising that those with lived experience offer unique insights into priorities and practical needs. Central to this approach is the adaptation of communication methods, environments and technologies to accommodate cognitive and sensory changes, while fostering respect, autonomy and dignity. Inclusive engagement draws on interdisciplinary frameworks from social care, gerontology, design and ethics to ensure that care pathways, support networks and innovations are co-designed in partnership. Globally, this paradigm shift has demonstrated benefits in enhancing social connectivity, reducing stigma and tailoring interventions to diverse cultural contexts. By foregrounding empowerment and shared decision-making, inclusive engagement not only improves the relevance and acceptability of dementia services but also reshapes research agendas to reflect questions that matter most to people affected by the condition.

Research from Nature Portfolio

No recent Nature Portfolio content available.

Inclusive Engagement in Dementia Care publication trend

The graph below shows the total number of articles in inclusive engagement in dementia care across all publications each year (not limited to Nature Index journals).

Technical terms

Co-design: A collaborative design approach that involves end users, care partners and professionals working together to develop services, products or environments.

Co-production: Joint planning, development and evaluation of research or services by people with lived experience and professionals, sharing power and responsibility throughout the process.

Patient and Public Involvement (PPI): A framework for actively incorporating the views and expertise of patients, carers and the public into all stages of research and service development.

Participatory Action Research: A cyclical methodology in which participants and researchers co-investigate issues, reflect on findings and implement actions to address identified challenges.

Cognitive Interviewing: A technique to test and refine research tools or surveys by exploring how participants understand, interpret and respond to questions, ensuring clarity and relevance.

References

1. ‘I already forgot half of it’ – Interviewing people with dementia for co-designing an intelligent system. Human-Computer Interaction (2023).
2. Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement. BMC Geriatrics (2024).
3. Facilitators and barriers to co‐research by people with dementia and academic researchers: Findings from a qualitative study. Health Expectations (2019).