Blog by Marney Walker, a Research Degree Candidate at Lab4Living, Sheffield Hallam University
I first learned of the Dementia Pioneers when I attended a session at the UK Dementia Congress in 2019. Your comments and remarks at that session had a significant influence on the development of my study.
Subsequently, the Dementia Enquirers Masterclasses were a brilliant opportunity to learn how to make sure my research has value and relevance to people living with dementia. The chance to meet you in person and hear your views on my study has been invaluable. It really made me think about my approach and how I come across as a researcher.
These are some of the things I have learnt:
- Using a video rather than a written application helped me to understand other ways to get my message across.
- Negative attitudes and assumptions have a big influence on whether people want to identify as having dementia.
- Many professionals can be patronising, so it’s important to be aware of how I come across.
- Earning trust: take the time to let people get to know me.
- Rather than going in and saying I want to know everything about you, I need to tell people about me. It goes both ways.
- There are different ways to obtain consent (during the process, verbally or in advance), that avoid excluding people who want to take part.
- Making sure I can tailor my interactions to suit the person, their capabilities, and preferences.
- Finding ways to ensure that people who want to take part can, so that more people can be included.
- Being aware of how tiring it can be, taking breaks and pacing sessions.
- Keeping people informed about the progress and outcomes of my research.
The more I learn from people living with dementia, the more I am reminded how much you can do to challenge negative social attitudes and assumptions.
The Dementia Enquirers message is so powerful. I could not have got this advice from anywhere else. The emphasis that you place on focussing on capabilities has become an underlying principle in my approach. I have made use of the DEEP resources on ethics and communication in my process.
I hope your work can continue to influence how research into dementia is designed, planned, and carried out.
Recognise your own strengths and weaknesses, and prioritise building strong collaborative relationships.