Websites of associations that engage in dementia, as well as virtual forums can be useful and easy tools for their temporal availability and for the timeliness of responses. More and more people are using the internet for information on health issues. From the Censis survey (2014), 19.3% consult a patient association site to better understand the characteristics of a disease, what to do, who to contact, 19.9% follow a blog or are part of a discussion forum on health issues, 16.2% ask for a medical consultation on a forum. In addition, forums and websites can provide information and answers in languages other than Italian, which are useful if there is the intervention of a caregiver in the care of the patient.
The group of self-mutual help for the caregivers of the patient with dementia, which will be presented later, has been activated within the PDTA of the patient with dementia of the Specialized Diagnostic Center, Territorial Expert Center for Dementia of the ASL Latina, Hospital A Fiorini di Terracina coordinated by Prof. A. Currà.
The self-help groups took place in: U.O.S.D. of Psychotherapy and Psychosomatic Medicine, Head of Dr. L. Cervelloni, facilitator of the group Dr. A. Costache. The caregivers participating in the groups were sent by the U.O.C. University Neurology, Head of Prof. A. Currà.
Before starting the groups, a grid was generally planned to be followed for the sequence of the meetings and the respective objectives. It was also proposed to be able to change the initially planned sequence according to the needs of the caregivers, needs that could emerge during the meetings and that were a priority to improve their lifestyle and their loved ones. We hypothesized that requests for medical information on the disease, information on economic aid and home care would have emerged, for which, in addition to the psychologist, other operators were involved: neurologist, professional nurse, social worker, health assistant.
Eight meetings were planned every two weeks, lasting 2 hours. To give more availability to participation, 2 groups have been formed: one in the morning and one in the afternoon. Each was attended by 5 caregivers of which 4 continuously and 1 occasionally. The 10 caregivers participating in the group took care of patients with different degrees of cognitive and behavioral impairment.
The first meeting with the caregivers was a presentation meeting. The project was exposed to them, the group was defined with its objectives and operating methods. The availability of caregivers was assessed and it was thus possible to make the ‘contract’ for participation in the groups. Difficulties immediately emerged regarding the timetable and length of the meetings. It was therefore agreed to reduce the length of the meetings to 1h30. They were then asked to introduce themselves, to report the bond (affective / relational / kinship) with the patient, the history of the disease, their expectations regarding participation in groups and the meaning attributed. An experience of loneliness and isolation emerged accompanied by poor information both on the disease and on the local services in charge. They have not expressed any kind of expectation. At the end of the meeting, all the caregivers expressed satisfaction with the initiative.
In the second meeting the Caregiver Burden Assessment questionnaire was administered to the caregivers (there were 8 present). The CAREGIVER BURDEN ASSESSMENT (Montgomery et al. 1985) is a tool that evaluates caregiver stress. It is composed of 14 items each structured on 5 degrees.
The CBA allows us to assess the presence, extent and structure of the caregiver’s discomfort and was chosen to direct us towards the actions to be implemented, the targeted interventions and the operators to be involved in subsequent meetings.