Agitation can be a common occurrence in people with schizophrenia, bipolar disorder and dementia. Some research has attempted to define agitation. From the patients’ perspective this has been described as a feeling of unease, tension, restlessness and/or nervousness. It is important to differentiate between agitation due to mental ill-health itself, agitation due to somatic illnesses and restlessness which can arise from the use of anti-psychotic medication for bipolar disorder and schizophrenia.

So far, there is no patient centred tool to identify and manage the first signs and symptoms of agitation to prevent unnecessary interventions and escalation into a severe episode. There are certain tools that enable the measurement of agitation, but these have not been developed from a patient perspective. By involving patients in further developing these tools there is an increased chance of these being able to identify the problems earlier and more accurately and improve their ability to self-manage their own condition and reduce agitation.

In this project, GAMIAN-Europe produced a guide in collaboration with EUFAMI about how to manage agitation written by patients for patients, their families and caregivers with the aim of providing information about the experience of agitation, what leads to it, early signs, effective interventions and ways to, empower patients and their families to manage agitation. The objective was to compile and simplify information found in recent research on agitation and present it in a way that is accessible to patients and families.