My Dementia Care PhD Journey

There is the misconception that completing a PhD is a lonely journey, however, this couldn’t be further from my experience. My name is Connor McDonald, and I am in the final year of my PhD nearing thesis submission and will soon be preparing for my Viva. In this blog, I would like to briefly talk about my experience as a full-time PhD student within the Alzheimer Scotland Centre for Policy and Practice in the School of Health and Life Sciences, and why I decided to do a PhD in dementia care. 

I was fortunate enough to be granted the Wendy Baxter Scholarship to fund my research. The focus of the Wendy Baxter Scholarship is to collaboratively develop an approach to optimise family care home visiting experiences with their relatives living with advanced dementia. In particular to develop opportunities for family involvement in creative individualised activities. It is well known that caring for a relative with dementia is both a rewarding and emotionally challenging experience. As dementia progresses it is common that family carers experience psychological and emotional strains including anxiety, depression and increased feelings of guilt and loss, which are often exacerbated by their loved one moving to a care home.

As such, the aim of my research was to collaboratively develop a family centred approach to reminiscence. This was a practical tool to help shape enjoyable visit activities, led by the family of care home residents who have dementia. Using action research, I worked with family members to develop ways that they ways that they could incorporate reminiscence into their visits and determine the outcomes that matter to them. We then co-created a booklet built on the study findings to support the delivery of reminiscence that could be used by other families who were not involved in the initial study.

This is a topic area that is very close to my heart as I am currently a carer for my Dad who was diagnosed with early onset vascular dementia around nine years ago at the age of 52. Whilst this has undoubtedly been a challenging few years for us as a family, my Dad is still my Dad and on the whole, his personality is still as bright and at times cheeky as it always has been. Although my Dad is still living at home, this was crucial for me to bear in mind for my own study as it is important to see past the diagnosis and see the person that still remains and place them at the forefront. 

Another crucial source of support throughout my PhD has been my supervision team. They have been instrumental in pushing me to not only grow as a researcher, but also has a person. For example, I highlighted at the start of my PhD that my confidence was an area that I wanted to improve on as I knew that it was something that I lacked in myself and didn’t want it to reflect in my work. My supervisors helped me to become more confident in myself by asking me to do small presentations before my supervision meetings and to send over drafts of work that were unfinished rather than delaying by aiming for a perfect draft. Furthermore, I have since:

• presented a poster at the UWS Research Festival
• presented my study outline at an Open Meeting organised by the centre
• presented at an international seminar with our centre, the Alzheimer Scotland Dementia Research Centre in the University of Edinburgh, and Charles University Prague
• presented at conferences such as the Scottish Dementia Research Consortium Annual Conference, and the Alzheimer Europe Annual Conference in Geneva

These presentations are testament to the support I have received from my supervisors, and continue to receive, as previously I never would’ve felt that I could do them, never mind volunteer myself. On a personal level, my supervisors have been a crucial source of support for me as they are aware that my research area can be a bit close to home at times and I know that I could talk to any one of them if I needed to. 

Prior to starting my PhD, I had read warnings that it could be a lonely journey without the same cohesive student body that was present for my Honours and Masters degrees. However, this couldn’t be further from my own experience. From the offset, I have had invaluable peer support as there are three of us who started our PhDs at the same time, and we quickly formed a support network. We have an informal WhatsApp chat where we can help each through any issues we may have or to simply offer encouragement when it feels like we’ve lost our way. This support network also extends to the centre’s student body as we are always finding ways to help each other out. A key example of this has been our Café Working Days during which we meet up in a local Waterstones café to work, but also to socialise and have that much needed peer support. This support also translates outside of the academic environment, as we have also met up socially whether for coffee or dinner, or go to the cinema. 

Moreover, by attending events such as the Scottish Dementia Research Consortium Conference and the Alzheimer Scotland Conference, I know that there is a wide-ranging support network available to me through groups such as Alzheimer Scotland and NDCAN that I’ll draw upon throughout my study.

To briefly conclude, whilst a PhD is often thought of as a lonely journey, this has been far from my experience through the continued support from the Baxter family, my supervisors, and the wider student and staff community that have helped me to feel part of the Alzheimer Scotland Centre for Policy and Practice.