Research and evaluation practice and ethics often seeks to balance safety with inclusion. When working with communities, evaluators, ethics committees and commissioning agents sometimes prioritise safety to minimise risks. Informed consent is the standard commonly used to ensure safety.
A safety-based approach can reflect our biases and the underlying assumptions we make about the contributions possible from some communities. A safety-based approach, while important, risks excluding communities such as people living with dementia. Historically, people living with dementia have been excluded from research because of informed consent requirements and the perception of potential harm from participation. In recent years, people living with dementia have demanded inclusion in research about dementia. These advocates created guides to enable safety and inclusion in research practice. Research shows the benefits of participating in evaluation and research include improved well-being, social inclusion, better access to care and support, and feeling valued. We think evaluation can and should achieve safety and inclusion.
Since 2018 Litmus has worked with Alzheimers New Zealand. Alzheimers New Zealand supports and advocates for people living with dementia. We conducted lived experience research in 2018 and in 2020/2021 we evaluated the services and support provided by four local Alzheimers New Zealand organisations. Across these two projects we interviewed 28 people with dementia.
This presentation shares lessons we learned about safety and inclusion working with people living with dementia. We will share resources and tools for enabling participation and the benefits of taking this approach. We will identify where and how these lessons can apply in other areas where safety and inclusion are seen to be in conflict.
