Background In Italy, just like in many other countries, there are no long-term care facilities specified for people suffering of Huntington’s disease, especially when their needs are represented by severe challenging behaviours which make them impossible to live at home
Aims To answer to needs of people with HD and severe, long lasting, challenging behaviours, we develop and implement a protocol of care QoL oriented to sustain them and their peers in their daily life. Promoting this protocol align the care’s management of these people special needs in a residential setting with other very different disabled people.
Methods/techniques Our service consists of a net of 21 residential facilities (different for prevalent support needs: challenging behaviours, high functioning, health needs) with 408 adult subjects with IDD and Autism aged between 18 and 90. Only 6 of them are affected from HD and they don’t live in a dedicated setting because their needs are very different. To satisfy the different needs of our population we adopted a QoL model of care (R. Shalock), OMS paradigm of human functioning and we select evidenced based instruments and interventions in a multidisciplinary approach: both a clinical level and a management level.
Outcome The defining specific protocol of care for people with HD supports the clinical decision making process of intervention across lifespan.
Conclusions Developing a good practice of care, QoL oriented, to manage special needs of persons with HD in residential setting, promote interventions person-centred and support patient, family and cares until end of life stages of the disease.
- QoL model
- special needs