Field Notes

 

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Explain the purpose of the project right at the beginning (more important than the background)

 

Does online / social media (in relation to a public engagement tour) present challenges for consent in the long run? i.e. once it’s out there, it’s out there.

 

It’s important to listen more and ask people to expand when they speak or ask questions.

 

Explain the development of working methods and situate the project in the context of research.

 

Find ways for people to participate early on and throughout (eg, a show of hands)

Always check sound levels

 

Be clear about what we want from each audience we work with and why.

 

Carers have a strong interest and stake in how loved ones are represented, it's important to listen to concerns.

 

Ask for both positive and negative feedback – criticality is important.

 

Why is it important for people to get involved (who don’t necessarily have personal ties to dementia)?

 

Do artistic environments create better spaces for opening up?

 

The levels of insight from the carer and the PLWD are different.

 

History taking and taking time for conversation are the most important part of an assessment.

 

Having continuity in appointments with clinicians can act as an important form of support.

 

The MMSE is talked about a lot and I’ve never heard anything positive said about it.

 

Aspects of this project may be inappropriate for people living with dementias.

vs

Aspects of this project may help communicate the experience of dementias to people who don’t live with them.

 

It is upsetting to (perceive yourself) not to be able to do something.

 

It is incredibly rewarding to overcome that feeling

 

Helping each other out and listening is an important part of that process.

 

People may participate, but not be able to understand consenting process – these people will be excluded from the presentational side of the project (information sealed / closed off).

 

Reading out scripted information is not good – it’s important to be personable.

 

Taking time to get to know each other is really important (parachuting in is ineffective and uncomfortable).

 

What do we mean when we say we are aiming for ‘new forms of assessment’?

 

Researcher notes the challenge of being personable vs getting results when testing (part of professional development?)