A growing body of research seeks to include people with dementia as both participants and co-designers. It is also increasingly recognized that dementia research must pay greater attention to informal care, provided by family and friends in non-institutional settings, because this is the situation of most people affected by dementia. Accessing these kinds of naturalistic care sites through meaningfully inclusive studies can be challenging for researchers in many fields. The paper aims to discuss this issue.
This paper describes a methodology designed to facilitate meaningful inclusion and access to hard-to-reach dementia care networks. It describes the implementation of this methodology in the field, the problems that emerged and the lessons learned.
A two-step sampling approach was used. People with dementia were sampled through organizations unrelated to dementia. Care networks were sampled through ecomapping with people with dementia. The strategy successfully accessed the desired population, but it was labour-intensive and biased the sample in several respects.
It is hoped that this outline will encourage further reflection and discussion regarding methodological approaches to complex sampling and recruitment issues in dementia research.
