Dr Paula Jacobs
One reason often given for not including people with a learning disability and dementia in research is the anticipated difficulty with verbal communication. Additionally, sometimes people with a learning disability have not been told of their diagnosis of dementia. Thus, in most research studies that include people with a learning disability and dementia, researchers don’t actually mention the word dementia or ask people about it directly. For us, it was important to have more open and honest conversations using appropriate tools, and to be sure that couples knew about the diagnosis. We thought carefully about how to best facilitate those conversations to ensure they are accessible.
exploring relationship journeys – what are we doing?