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

listen

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.

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