Ethical questions for artistic engagement and research with people living with dementia

 

How is consent gained (& ongoing consent)?

 

Does consideration of capacity and consent exclude people from participation?

 

Does the project encompass differences in emotional range (not one size to fit all)?

 

What is the comparative value to the participant to the practitioner?

 

What happens (to the project, people, work, data etc) after the activities end?

 

Process vs product (for whose benefit)? How do audiences change as the project progresses?

 

Is it problematic for ‘dementia’ to act as an inspiration for artistic work / research?

 

To what extent does the project interact with the person vs the illness?

 

What considerations are there in place in terms of carer involvement?

 

Does the extent of engagement offered suit the form and aims of the project?

 

Are the activities culturally and socially inclusive?

 

If work is by nature exploratory, how is this (uncertainty) communicated?

 

How can the value of uncertainty in the process be aligned with clear, structured pre-emptive protocols?

 

What is the justification for appropriation (in art and research)?

 

Is criticality of the methods used embedded in the project and are there ways to adapt and change?

 

Can the benefits of criticality outweigh the benefits of positive engagement?

 

What is meant by positive engagement? i.e. what sort of experiences are to be encouraged?