I joined the Centre for Dementia Research in June 2021. As a social gerontologist and a senior Atlantic fellow with the Global Brain Health Institute, my work brings together international brain health issues. I specialise in patient-public-involvement in research and engaging marginalised, often unheard voices affected by brain health issues. I serve as a co-founder and adviser to the World Young Leaders in Dementia (WYLD) and co-lead for the Organisation for Economic Co-operation and Development’s (OECD) Brain Heal Diplomacy Working Group.

Tell us a bit about yourself and what led you to working within the School of Health

My work in the School of Health has just begun. I joined Leeds Beckett University in June 2021 and am looking forward to moving forward a number of projects. Two that are initially on my plate are first, leading a study looking at participant engagement with brain health research and second, co-developing a Peer Mentorship programme with people with dementia.

Firstly, working in conjunction with the PREVENT Programme, a large-scale, multicentre study which aims to establish novel and clinically applicable early biomarkers of Alzheimer’s disease, and funded by a Global Brain Health Leaders award, I am leading a study exploring the motives, facilitators and barriers to participation in dementia prevention / risk-reduction research in healthy middle-aged adults who are underrepresented in research. The main outcome of this study will be to develop guidelines for researchers to encourage diverse, equitable, and supportive recruitment and engagement of participants.

Secondly, I will co-develop a Peer Mentorship programme to be delivered over video conference technology (such as Zoom) for people with dementia in the community. With funding from UKRI’s Healthy Ageing Catalyst award, I will work with people with dementia to co-design a curriculum to help support people receiving a dementia diagnosis.

What makes you passionate around your work around dementia and why is it important?

My work is mostly about brain health and getting people involved in research. I am interested in helping individuals who are cognitive diverse, such as with dementia, find ways to support their own independence and wellbeing.

In the UK there are 850,000 people with dementia. Half of all people with dementia receive insufficient post-diagnostic support, suffering from high rates of social isolation, loneliness and low quality of life. With increasing rates of dementia, PLWD have highlighted a need for opportunities to support one another, for sharing information and to foster a sense of hope and resilience. Marginalised and socially disadvantaged individuals have both higher risks of developing dementia and then greater difficulties accessing and receiving support post diagnoses.

The Peer Mentorship programme will work with PLWD and people who support them, with an emphasis on including those who are experiencing compound marginalisation, both with dementia, as well as being a member of a marginalised group. Using co-design methods, we will co-develop the Peer Mentorship programme to be delivered over video-conference technology. For my work in the PREVENT Programme, I am excited about being able to help support the research community to design projects that are more inclusive.

How is collaboration integral to your work, and what are one or two collaborations that have been most meaningful to you?

So far, the most meaningful collaboration that has been integral to my work is my collaboration with several international dementia advocacy groups. Through continuing to receive guidance from people with dementia my work becomes stronger and more relevant to those who I am actually trying to support. I am also incredibly grateful for my collaborations with the Atlantic Institute and Global Brain Health Institute, where I receive support and guidance from faculty and peers. 

What achievements in this area have you been most proud of while working in the School of Health?

Firstly, this publication is based on my PhD work. I used ethnographic methods to provide insight into the everyday realities facing care aides working in long-term residential care, and the implications for the delivery of care to residents, particularly older adults with dementia. The first publication from my PhD has been published in the Journal of Advanced Nursing.

Secondly, I am also incredibly proud of being asked to lead the OECD’s Brain Health Diplomacy Working Group. I am excited about what this unique group of international brain health experts, advocates, diplomats and academics will create to promote brain health initiatives and collaborations. I am also thrilled to receive a UKRI Healthy Ageing Catalyst award and am excited to co-design the Peer Mentorship programme to support people who have been newly diagnosed with dementia.