Dossier n. 244/2014 [Abstract] Perceived quality in Cognitive Disorders Centres. Materials and proposals

In Emilia-Romagna Region there are 55 Cognitive Disorders Centres (CDC), that, in compliance with the provisions in the regional legislation of reference (DGR no. 2581/1999 “Regional dementia project”), over the years have implemented global care paths through multiple and diverse performances, and have addressed people with dementia and their caregivers/family member at various stages of the disease.

Facing an increasingly complex reality, marked by not only clinical but also relational needs, in a context of network and connection between a plurality of actors and stakeholders, it has been necessary to propose and implement moments and tools of monitoring, assessment and self-assessment within the CDC, to highlight the correspondence between services offered and real needs, and the critical areas on which improvement actions in the path followed by cared citizens - considered as both patient and caregiver - have to be implemented.

The involvement and participation of the citizen in these moments of evaluation, confirmed and encouraged by numerous national and regional legislative initiatives and also through surveys of perceived quality, is an opportunity and a necessity. The citizen-user of the service is the person who, using that service, can offer quality information based on own experience, own life.

The right definition of a path to measure perceived quality is: finding a suitable instrument, defining times and ways of delivery, qualitative and quantitative analysis of information collected, returning and sharing the results through the development of targeted communication strategies, differentiated in order to reach all relevant stakeholders (internal and external) integrated with elements of other sources of evaluation and monitoring. This allows the identification of service improvement and active involvement of the citizen-user of the CDCs.

But who is the citizen-user who receives CDC service and participate in the present survey of perceived quality? The measurement of perceived quality takes on peculiar characteristics within the Centres for cognitive disorders, both for the pathology of people who use the service and for the impossibility of identifying a single type of service target.

The person affected by the disease is definitely the main user of the Centre but there is no doubt that the service should pay attention also to the caretaker of the patient: a relative, a family assistant, a friend, a partner, a support administrator or, more generally, a carrier of interest.

Starting from these basic assumptions, through the involvement of staff, families and volunteers involved in Cognitive Disorders Centres, a specific and operational model of measurement of perceived quality has been identified. This model provides the realization and testing of an ad hoc tool for the users of the Centres, meaning the people directly affected by cognitive deficits and their family/acquaintances who accompany them and take care of them.

Access to the Service, information received, emotional support and respect for the values, preferences and personal needs are among the areas identified and investigated by the model of measurement tested.