There is now compelling evidence that Alzheimer’s disease (AD) takes hold in the brain decades before dementia symptoms appear, providing a window of opportunity for preventative efforts to stop the disease before the onset of dementia. Today’s research increasingly involves the whole continuum, including the earlier stages of the disease. This is accompanied by increasing numbers of patients in pre-dementia stages visiting the memory clinic with a strong need for information about their current disease or health status and the consequences for their daily life. This paradigm shift towards earlier AD stages and personalised medicine creates new challenges for clinician-patient communication. It can both be difficult for the clinician to communicate about AD biomarker results and dementia risk and for the patient to understand the message.
New research published in the journal Alzheimer’s Research & Therapy investigated the opinions of European memory clinic professionals on communicating about (etiological) diagnosis, prognosis, and prevention with patients and their care partners in the memory clinic. This study was conducted in the context of the EU-FINGERS and LETHE projects.
160 memory clinic professionals from 21 European countries completed an online survey, consisting of four parts: (1) characteristics, (2) statements, (3) patient cases, and (4) needs and preferences for communication support. The majority of professionals agreed that communication on diagnosis, prognosis, and prevention should be personalised to the individual patient. However, professionals differed in how they would explain the meaning of (ab)normal biomarker results to patients, depending on their disease stage. In addition, the majority of clinicians would appreciate communicating skills training or online tools to support them in these complex conversations. These findings can inform the (further) development of such tools and communication skills training programs, and aid the implementation process.
Congratulations to all authors: Heleen M. A. Hendriksen, Aniek M. van Gils, Argonde C. van Harten, Tobias Hartmann, Francesca Mangialasche, Anita Kamondi, Miia Kivipelto, Hanneke F. M. Rhodius-Meester, Ellen M. A. Smets, Wiesje M. van der Flier and Leonie N. C. Visser!
You can read the paper here: https://doi.org/10.1186/s13195-023-01276-9