The RECAGE project is centred on people with dementia (PwD), an adult age onset mental disorder with high prevalence; people with dementia living in high income countries are a vulnerable population when they enter the moderate and advanced stages, in whom they lose their autonomy and competence. Dementia places a very heavy burden on affected people, families, communities and societies at large. The burden is at its maximum in the moderate and advanced stages of the disease, in whom the patient needs help to perform the ordinary activities of daily life (IADL and ADL). The informal carers must spend much, if not all, of their time assisting their relative. The burden increases further when the person exhibits abnormal behaviours, the so-called Behavioural and Psychological Symptoms of Dementia (BPSD), who often put families into a crisis that lead to early nursing home placement, i.e. to the social exclusion of the patient. There is no wide consensus on the best way to cope with BPSD. A promising intervention, although not yet enough validated, is the admission – during the phases of severe agitation and/or other behavioural disturbances – to a special care unit for BPSD (SCU-B) aiming at treating BPSD and possibly discharge the person back home. A SCU-B is a residential medical structure lying outside of a nursing home, in a general hospital or elsewhere, e.g. in a private hospital, where patients with BPSD are temporarily admitted when their behavioural disturbances are not amenable to control at home. The goal of the RECAGE study is to adapt and scale up this intervention, but first we need to strengthen the evidence of its efficacy. The specific objectives of RECAGE are:
A. To start a prospective cohort study, comparing the activity of the centres endowed with a SCU-B (Gazzaniga, Modena, Ottestad, Genève, Mannheim) with that of the other centres lacking this structure (Thessaloniki, Mantova, Bergamo, Perugia, Paris, Berlin). The study will allow us:
• to assess the short and long-term clinical effectiveness of SCU-B on BPSD
• to measure the changes of the quality of life of the PwD/carers over time
• to explore if the SCU-B is effective in delaying institutionalisation
• to explore the cost-effectiveness of the SCU-B
• to evaluate the ethical aspects of care in the SCU-B (e.g. attitude of the staff/relatives of PwD)
B. To adapt the model in accordance with the results of the cohort study, not only regarding the main endpoints, but also comparing the experience and the different ways to work of the participating centres and the different socio-political context in which they act
C. To scale up the intervention in the countries who take part in the study, but where SCU-B are absent or sporadic as Italy and Greece.