Lived Experience

A key strength of DeNPRU-QM is the integration of people with lived experience into our work. Across England, people living with dementia or a neurodegenerative disease and family carers, current or past, are actively encouraged to become involved in our work. This ensures our approach is relevant from beginning to end.

Patient and Public Involvement and Engagement Lead

Hi, I’m Mohammed Akhlak Rauf and I have worked with people affected by dementia for the last 18 years. I run a community interest company called ‘Meri Yaadain CiC’ (meaning ‘My Memories’), which supports South Asian people affected by dementia. I have a particular interest in inequalities and diversity (in a wider sense) as well as how we can involve and engage people living with dementia and family carers. I have a PhD in understanding coping strategies as well as an MBE from the late Queen to recognise my work in the dementia field. Within DeNPRU-QM, my role is to have an overview of Patient and Public Involvement and Engagement (PPIE). I look forward to working with people from the steering group through to our PPIE champions to ensure that we have a good range of diversity of voice and of experience.

Public Advisor Researchers (PARs)

Our Public Advisor Researchers, Annie, Sue and Emma all have personal experience of caring for family members with dementia and/or a neurodegenerative disease. They are employed one day a week as researchers, not only to share their lived experience but to actively work on projects and develop their research skills with support from the wider DeNPRU-QM team. This includes being involved in the initial development of projects, shaping study documents, carrying out data collection and the analysis and interpretation of the findings, and supporting dissemination.

Patient and Public Engagement Group (PPEG)

Our Patient and Public Engagement Group (PPEG) meets monthly. The members are either people living with dementia or a neurodegenerative disease or are current or formers family carers.

PPEG members have a regular involvement with DeNPRU-QM and are assigned to projects to actively support and provide the lived experience perspective across the lifespan of the project.

Hi, I’m Rosemary Phillips and I’ll be co-chairing the monthly Patient and Public Engagement Group (PPEG) meetings with Rachel Horne. I cared for my parents, both with mild dementia – one Alzheimer’s, one vascular dementia – for some years. During that time, I retired from being a teacher. I also became a volunteer with the Alzheimer’s Society, which led to me becoming drawn towards dementia research with a focus on lifestyle changes to reduce one’s risk of dementia. Through my involvement as a volunteer, I got to know Professor Claudia Cooper, who is one of the co-directors of DeNPRU-QM.

Hi, I’m Rachel Horne. Along with Rosemary, I’ll be co-chairing our monthly PPEG – something I am really looking forward to. I was diagnosed with multiple sclerosis in 2009 when I was 43. Since then, I have used my background as a journalist to write about living with a chronic disease – from diagnosis, treatment through to care services – and what it’s like to be a ‘forever patient’. I am also an Honorary Research Fellow at Queen Mary, which is how I first heard about DeNPRU-QM.