Global Perspectives on Person Public Involvement & Engagement in Dementia Research & Projects

This Global Brain Health Institute (GBHI) webinar will explore global perspectives of Public and Patient Involvement and Engagement (PPIE) in dementia research and projects through the lens and work of Global Atlantic Fellows for Equity in Brain Health at GBHI. Hearing from three fellows, perspectives from Africa, Europe, and South America will be explored in collaboration and discussion with current PPIE participants.

Traditionally, health research and service development has been governed by professional experts who have largely bypassed patient and public feedback and experience. In these scenarios, top-down approaches of decision making, without representation of people with lived experience, have prevailed.  However, more recently, this model has begun to change. Researchers, clinicians, and artists are collaborating with individuals with lived experience, not just as consumers of research, or recipients of care, but as important stakeholders in the entire research or health services development cycle. PPIE is actively advancing developments in dementia research and brain health.

Event Program

Event Chair

• Iracema Leroi, GBHI faculty member; Professor of Geriatric Psychiatry at Trinity College Dublin

Speakers

Dialogue between lived experience and the scientific data as a pathway for change

• Ieva Petkutė, Atlantic Fellow for Equity in Brain Health, GBHI; Co-founder and lead of the national association “Dementia Lithuania”; artistic researcher/creative director at the NGO “Socialiniai meno projektai” and EdD student at the Lithuanian Sports University

Unravelling the mysteries of Dementia in our communities

• Khanyo Ngcobo, Atlantic Fellow for Equity in Brain Health, GBHI; Specialist Psychiatrist, University of KwaZulu-Natal, South Africa

Talk title to be confirmed

• Bárbara Costa Beber, Atlantic Fellow for Equity in Brain Health, GBHI; Speech and Language Pathologist, Universidade Federal de Ciências da Saúde de Porto Alegre, Brazil

PPIE Panel Participants

• Jolita Švatienė—a mother of two girls, and a daughter to her mother, who has Pick’s disease, a type of frontotemporal dementia. Jolita worked as a nurse in a care home in Norway before returning to Lithuania to support her mother, when she was no longer able to live independently. Alongside association “Dementia Lithuania” Jolita has been active advocate for the need for change in the carer support system, and an active contributor in initiatives, such as “Memory walk”, that aim to raise awareness and combat stigma.  
• Participant to be confirmed—PPI member from the Bessie Makatini Foundation, a non-profit organization committed to making a positive impact on people living with dementia in South Africa.

Resources

• Blog Post: A Global Perspective for Implementing Patient and Public Voice in Research
• Project: Person and Public Voice Program: At Home and Beyond