New study on "Development and design of a diagnostic report to support communication in dementia: Co-creation with patients and care partners" co-authored by Alzheimer Europe

06/09/2022

Alzheimer Europe is delighted to have co-authored a new paper, published in the journal Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring and entitled "Development and design of a diagnostic report to support communication in dementia: Co-creation with patients and care partners". The paper was authored by Aniek van Gils and her colleagues Leonie Visser, Heleen Hendriksen, Wiesje van der Flier and Hanneke Rhodius-Meester at the Alzheimer Center Amsterdam, together with Jean Georges, Executive Director, Alzheimer Europe. In this international publication, the researchers share the importance of using a "results page" in memory clinics, to help the patient (and their carer/supporter) understand and remember what is happening to them. Many different tests are often done before doctors make a final diagnosis and previous research has shown that people going through this process often feel that the results of these tests are not communicated to them clearly.

Oncology studies, for example, have shown that a hard-copy results page can help with understanding and absorbing the information given. That being said, a diagnostic report page including test results is not yet in use in memory clinics. The DAILY study, which aims to translate digital technology into clinical practice so as to support physicians in the daily challenge of dementia diagnosis, looked at creating such a paper as a useful tool in the memory clinic setting. Aniek van Gils and colleagues investigated what this page might look like, designing it together with patients and their carers/supporters. The page was designed in focus group meetings with a number of patients and their care partners. The overview includes the diagnosis, followed by a short explanation. The various test results are shown (memory tests and epidural). Focus group members also wanted to see pictures of their own brain scans. The second page contains information about the course of the disease, tips to keep the brain healthy for as long as possible, practical matters, and where to find more information about the disease.

Finally, the prototype of the diagnostic report was presented to a larger group of patients, who in turn gave their feedback. In this manner, the researchers have taken a first step towards using a results page in memory clinics. The ultimate goal is to improve communication between doctor and patient, helping patients understand what is happening and feel more comfortable with the diagnostic process. This investigation and its results are shared in this new paper, published in the journal Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, to which Alzheimer Europe is delighted to have contributed. In a follow-up study, the team is currently testing this prototype results page in a number of memory clinics in the Netherlands. Furthermore, Aniek van Gils presented the research at the International Conference of Communication in Healthcare (ICCH) which took place in Glasgow, Scotland, from 5 to 9 September 2022. Read the full paper, here: https://doi.org/10.1002/dad2.12333