It was a huge privilege to give my inaugural professorial lecture at the end of my first year working at the Association for Dementia Studies, University of Worcester. My goal was to entertain and inform a sizeable group of people with all levels of prior knowledge about research and dementia. The topic was my career path, recent activities as a new professor and plans for the future of my role, with a focus on family care.
Whilst it is often the formal learning that prepares us for our work – in my case Registered Nurse training, a degree, a masters and a Department of Health funded PhD, it is the experiences along the way that colour us. I was keen to share critical incidents – practices I witnessed, people’s behaviour and their consequences – from working in a Learning Disability service setting, during my nurse training and as a General Nurse for 20 years in the NHS and 14 years in academia.
Whilst it is unacceptable practice and poor leadership that has affected me most, I have learnt along the way to take a more appreciative approach (thanks to the influence of my colleague, former PhD student and good friend Dr Natalie Yates-Bolton) and now actively seek what works well and strive to reinforce it, whilst letting those who achieve it know they have done good and that their best really is good enough.
I talked about early influences such as my dad teaching me about De Bono’s Lateral Thinking, long before I realised I had potential to have the career that I have had. Not bad for a kid from Salford! But if I’ve done well it’s because I had the advantages of health, food, shelter, schooling and of course people around me that valued my education and wellbeing and at times put their needs second to mine. I thank them all.
Along the way I know I have inspired others working in health and social care to make a difference – the power of a smile not just saving lives. I’ve done both on many occasions but it’s the ability to connect with others, often in desperate, uncomfortable or unfamiliar circumstances and offer some comfort, skill or compassion that really makes me a good nurse. My values base translates directly into working in research in a person-centred way and ‘standing in the shoes’ of the person being involved or participating in research.
Much of my research has focused on older adults as this was the clinical focus of my NHS work. Research areas include co-design of assistive and enabling technology, NHS and social care service evaluations and promoting public involvement in research. Early on I hadn’t seen dementia as a specific research field to focus on; I just saw it as one condition of (usually) later life that someone may have. What did attract me to work more closely with people living with dementia was my tendency to lean towards people who may be less heard to empower them to have a voice and research is one way of doing this. I was at times frustrated by a lack of understanding of the need and experiences of persons living with dementia amongst health and social care professionals yet empathised with them as dementia was hardly mentioned in the training of those groups. To help create better understanding of what it is like to live with dementia and how to do it better, was a goal for some years.
My specific focus on family care resulted from the formal partnership developed with the Dementia Carers Count charity by my research centre Director Professor Dawn Brooker. Sometimes the needs and experiences of people who care for a person with dementia may go less acknowledged or understood. Whether or not those who care see themselves as a ‘carer’ or not, I still knew from past experience that there was a need for a focus on them rather than their experiences sometimes feeling like an add-on or combination with those of the person with dementia.
Over the last year I have been consulting and engaging with family carers and those who are cared for by them or who support them, to gain a better understanding of their research priorities so that I can investigate their needs, experiences, interventions (activities) and outcomes (difference made). What is becoming clear is how there needs to be a real shift amongst more employers to better support staff who have caring responsibilities outside of work to better equip them to care and to help support their health and wellbeing. I also plan on doing more research into the needs and experiences of family carers in relation to care homes and evaluations of carer courses. Further blogs will highlight these and other topics in more detail.
It was wonderful to share my experiences of the above with 80 guests at my Inaugural Lecture. I particularly appreciated so many Dementia Carers Count Staff and Board members travelling to support me. I would also like to thank everyone else who came and/or helped organise and support it. Numerous people have helped me over the years as students, colleagues, partners, PPI representatives (Patient and Public Involvement) or research participants and I very much value the time and insights they have given so freely. Together we can do so much with and for family carers.
Below is a 60 minute video of the full lecture.