Getting to the nub of the issue: Involving people who are living with dementia


As a clinician I have always considered the patient or client I worked with and their families members part of the team. I would say that involving them in their own care; setting goals and choosing an appropriate intervention together was a no brainer. It’s seems logical as the intervention was ultimately all about them . So consulting with a group of people with primary progressive aphasia to discuss and plan my research project seems natural. It almost feels like the tables are turned- they are supporting me to set goals and are offering me all sorts of alternative ideas to support me in planning my intervention approach.

Patient and public involvement (PPI) formed a large section of my grant application form for my PhD. On asking for advice on what this section should include I was surprised when I was informed this section should explain how you as a researcher have consulted with people with primary progressive aphasia themselves. I was surprised to have to write down that I had been ‘listening’ to people during clinical practice (!?). Doesn’t everyone listen to their patients. Isn’t most clinical research based on what people want and need? But as I continue this work I have realised that PPI is much more than just listening. PPI means that people with primary progressive aphasia critique and develop and direct the research toward the route it really needs to travel. Truly this is their project not mine.

People with primary progressive aphasia and their families have really enhanced my research.  I have realised how important it is to have an informed alternative perspective on my work. I have found people have provided ideas I had not previously considered. I have also found I have really enjoyed discussing the project with people who are enthusiastic and engaged. It sometimes feels that my steering group have been a sort of cheering squad, who provide me with the energy but also a different view of the ‘pitch’. They compliment my project.

However, I have to say engaging engaging people with primary progressive aphasia and their families has also been a slightly challenging experience.  I have found the same group of people who have been my biggest fans have also been my biggest critics. The first time this happened I had a moment where I found it rather confronting. But within the same conversation  I realised that this constructive criticism was so incredibly valuable. A research project can only truly develop when it is viewed and considered and “worked on” from all angles. I have now learned to embrace this- for people would generally not bother to give me these suggestions unless they felt the project was worth it! And I truly believe my research project is even more worthwhile with all these contributions.

Learning the language of the research world


Many of my previous posts on this blog have focused on all the wonderful transferable skills clinicians can bring to research, yet it is important to remember we also have much to learn. Had you asked me what I anticipated learning most about in the first year of my PhD I would have answered you by listing the training program from my research grant application. This included lots of intimidating scary things such as; research design and statistics, qualitative research methods, introduction to literature review methods and computer assisted qualitative data analysis. Now I have done some of this training these technical concepts don’t seem quite so overwhelming to my generally completely befuddled non-statistical brain (although I did understand the statistics of how to do a meta-analysis on a recent systematic review training course- yes I really truly did!).


As I start the 10th month of my first year I realise that I have learnt much much more and many of these things are a lot less tangible than the training courses I detailed above. I have started to learn the language and the culture of research. I have immersed myself in the community and am able to speak to the locals more effectively than ever before (both other researchers and research participants). Now, you may ask me what I could possibly mean by this, are they not still SLTs and people with dementia and their families?


Well let’s take people with dementia and their families for example. As a clinician I would use empathy, problem solving and listening skills. In fact, I applied much of the Model of Therapeutic Effectiveness described by Chochinov et al (2013). This model was designed from work done with therapists who counsel people with cancer and has been applied to therapists working with people with dementia and their families in a talk by Professor Rebecca Allen (a wonderful gerontologist from the US). Professor Allen highlights how we use therapeutic humility, therapeutic presence and therapeutic pacing alongside personal growth and self care in working with people with dementia. Yet as a researcher I am conscious I cannot display many of these skills when working with people with dementia in doing certain aspects of my research. At a recent RCSLT research champions study day (which I could not attend, but which I followed closely on twitter) it was flagged that qualitative researchers need to be aware of their therapeutic selves and avoid trying to empathise or judge but simply to listen. Reflexively considering your impact on the person and attempting to avoid biasing them with anything from your appearance to your style of questioning is a tricky concept. Simply introducing yourself as a healthcare clinician could bias a respondent to providing a more positive view of the NHS than if you introduce yourself as a student.


What about colleagues? Well this is another skill entirely. Some of this has been rather awkward for me; telling people how wonderful I am and flagging the fantastic work I have done/published/grants awarded etc is not the kind of thing I am used to. I am much more comfortable asking others about their lives. Yet promoting yourself, making sure people remember who you are and what you are doing is an important part of building a research career. The other side of this coin is indeed about asking others what they are doing; chatting to and engaging them, asking them questions and keeping in contact. Now that I can do. Yes…my friends and family can vouch for my ability to ask questions and engage even the shyest or grumpiest or important of people in a conversation about themselves. That is where the networking begins. And that is how relationships, collaborations and hopefully opportunities can be built. How exciting!


I am often surprised by what and how much I have learnt in only the first few months of this PhD adventure. I hope I become more fluent in the language of research, it is a beautiful language in my mind, with so many great new opportunities.