I am currently conducting a PhD research study which aims to understand what makes a good caring relationship between people living and dying with dementia and the care staff in a care home. I spent 10 months in a specialist dementia care home observing the interactions and relationships between residents and staff, and talking to the staff.
I chose a good care home as I wanted to understand more about good practice. The first home I invited to take part agreed, much to my surprise!
I strongly believe that people with dementia in care homes have a right to take part in research as their experiences, especially towards the end of life, are an under researched area where there is often room for improvement. However this has raised a number of ethical challenges, both at the outset and throughout the time of my research, particularly around informed consent.
It is great that ENRICH Scotland is now being launched to help researchers in care homes in Scotland.
Centre for Research on Families and Relationships
University of Edinburgh