Beth Johnson Foundation (Stoke-on-Trent)
The group were interested to explore people’s experiences of being tested for dementia. They were aware that they had all had different experiences, and there didn’t seem to be any consistency. The group developed a questionnaire asking about the dementia testing process. Completed questionnaires were received from forty two people. They conducted follow up interviews with twenty three people.
Most people said that no social history was taken during diagnosis. Over half had someone to accompany them during the test. Seventeen people did not have the test explained to them. People reported a range of different environments for testing, including a GP surgery, the hospital, a memory clinic in the community and home. A lot of people felt negative after the test, including feeling dismissed, frustrated, unsure about next steps and patronised.